Archive for the ‘Health care issues’ Category

Since I’ve been away…


I am very happy to be here once again posting to my blog.   I have missed being able to share my thoughts, feelings and information with you.

Unfortunately I have been unable to do even a little writing because of health problems.  First, I had a deep venous thrombosis (DVT) in my left leg. I was admitted to the hospital and put on a higher dose of anticoagulant medication.  I am still having pain sometimes and that leg.  We’ve switched insurance companies lately (my husband had to change his job to get better insurance that would pay for my meds) and it is been a struggle to get them to pay for some of my expensive medications.  I will talk more about that in an upcoming blog.

The most difficult thing that I’ve had to deal with is that my FTD is becoming worse and is affecting my ability to write.  I have so many stories in my head and so much that I want to share with people. My characters are screaming to have their stories told.  In the literature for FTD and one of the symptoms that doctors explain that may happen with FTD is apathy.

Before we knew I was diagnosed with FTD, Selch began to notice that I would not take my pain medicine even though I was in a tremendous amount of pain.  I did not seem to care about bathing even though I used to take two  showers a day, and that I would no longer pay the bills.

I think for me being labeled apathetic is not exactly the right term.  The problem is that when I am faced with the task, I become overwhelmed.  My mind becomes flooded with each detail of the task that I must do and I become paralyzed with fear to the point I am unable to take any action.  Then as a coping mechanism, I try to put out of my mind doing the task at all.

Now I am devastated that my FTD has started affecting my writing again.  I have so much information and so many stories that I want to share with everyone, but right now I feel like most of it is locked in my brain.  It is as if there were a large crowd of people who are trapped in a room but the control mechanism that used to be there to let them  file out in an orderly fashion is not working anymore.

Selch, as always my knight in shining armor, is working with me to help me to be able to write again.  Right now I’m using Dragon Naturally Speaking.  It is hard for the thoughts that come from my brain to go to my mouth instead of my fingers on the keyboard.

In the near future, I hope to once again be sharing my thoughts and feelings with you. Take care everyone, until you hear from me again.


Updates on Pain


Hi Everyone,

I have had a lot going on and I wasn’t able to post last month but I am back and hope to write three posts this week.  Most of you don’t know I like to visit second life now and again, lately it has been again and again lol.  Right now, I am in a virtual world at a writer’s camp out site. Nothing like writing in the woods.  Today they are having an all day writer’s marathon.  I don’t think I will be able to stay for eight hours but I hope to use the time to get out these posts.  Anyone who is on Second Life, my avatar’s name is Eppie Shoreman.  Any of you who are on SL or plan to be on SL, there is a support group for chronic pain at “The Centering Place” on Second Life.  Contact me for details.

Now I am going to give you some updates on pain.  I’ve been meeting many people in the last few months who have other illnesses and also have developed chronic pain disorders.  Many of them are suffering greatly because their doctors do not know how to treat their pain.  I encourage all of them to see a pain management specialist.  Unfortunately, as many of us know, even seeing a specialist is no guarantee that your pain will be controlled.

There is some new information in the American Pain Foundation’s Spring Newsletter.  For those of you who are interested in Occupational Therapy there is an article written by an Occupational Therapist.

In “Health Decision Putting Your Best Foot Forward,” the author talks about challenging the decision that the doctor knows best.  Most of us who have chronic pain disorders have found ourselves in the difficult position, should I listen to this doctor and go quietly out of his or her office without adequate support for pain control or should I speak up for ourselves and try to get the medication and therapies I deserve?

Getting adequate pain relief unfortunately often  means seeing several doctors until you find one that will really listen to you and agree to be part of your team in helping you achieve good pain control.

I have found that bringing Selch to my appointments has been a really big help.  Having someone go with you to your doctor’s appointment who is knowledgable about your condition and is willing to stand up for your rights goes along way in helping you to find  health care professionals that will help you with your pain.

If you don’t have a friend or a relative who can fill this role, I suggest that you check out local pain support groups in your area and see if you can find someone in the group who is willing to be a “patient advocate” for you.  If you can’t find someone locally search for support services available in pain foundations and also visit different pain support groups on the Internet.  Post that you are in need of someone in your are to act as a “pain advocate” for you.  You may not find someone right away but I’ve found that when I am looking for support, persistance matters.  If you are in too much pain, ask a relative or friend to do this for you.

I cannot stress how important it is for anyone with a chronic pain disorder to get the help they need to achieve good pain control.  Any of you that have other ideas and experience to share regarding finding help for pain control, feel free to reply to this blog post.

Karen Richards writes some interesting articles on pain.  See “Growing Pains, a Predictor of Fibromyalgia,” She refers to an article in Reuters and talks about misconceptions about growing pains and how growing pains may be an early indicator of fibromyalgia.

Another very interesting article by Karen is “War on Drugs Has Ended – What Does This Mean for Pain Patients?” If you have read my blog, you know that I have posted more than once about the “War on Drugs.” Karen writes, ” In May 2009, nearly four decades later, Gil Kerlikowske, the new director of the White House Office of National Drug Control Policy (ONDCP), declared the war on drugs to be over.”  This guy must not be living on the same planet as those of us with chronic pain disorders.

Health care providers and even pain management specialists in growing numbers are refusing to give people who have chronic pain the narcotics they need to function day-to-day in their lives because of past DEA actions, pending regulations and the constant media exposure of the continuing War on Drugs.  Totemism regarding narcotics is still prevalent.  There are still so many people saying that we need to get rid of these evil narcotics that are destroying so many lives.  Eliminating prescription narcotics will do nothing to stop people from recreationally using narcotics.  They will just go to another readily available source to get their drugs.  Pain patients are left without adequate pain control.  When will the media and the government start caring about the millions of people in the world who are suffering from chronic pain?

About the ONDCP’s educational efforts regarding the needs of chronic pain patients, I am afraid it is too little too late.

The Pain Monitor from the APF has some interesting info for people with chronic pain. It has news information about different pain topics as well as resources for chronic pain patients.

These are some pain updates for April.  As always, I hope to be your faithful correspondent.

Brain Scan-I Feel Your Pain


I just read an article about a brain scanner that may be able to help assess pain.

“The definition of pain is that it is subjective, and until now an objective measurement has remained elusive,” says Morten Kringelbach of the University of Oxford.”

As I have read before, the author points out that functional MRI scans have been used before to identify brain areas that “light up” when someone is in pain.  I was excited about this news when I first read it until I found out results varied from patient to patient.

I have never read about  analysing arterial spin labelling that  measures how much oxygenated blood is flowing through particular areas of the brain.

The procedure seems interesting but their participants for the study were 16 young men who had just  had their wisdom teeth removed not chronic pain patients.

Perhaps it will provide an additional way to assess pain in addition to the well-known “pain scale” which I agree with the author is an ” inadequate measure of pain”.

I’m not sure that identifying which areas of the brain are involved in a person’s brain will lead to personalized treatments that target those areas until we have drugs that are better able to target specific areas of the brain for treatment. Of  course physicians are learning more and more about which drugs work in certain areas.  For instance, methadone works better for central pain.

As the article points out, there are challenges because responses to pain do vary throughout the day and there will be differences in the level of brain activation in one person to the other.  Pain is still a complex issue and there is still much to be learned about pain syndromes.  Emotions affect pain and now physicians are learning that chronic pain can spread like a cancer and “glob on” to various emotional responses.

Jeffrey Mogil brings up the possibility of the brain scan being used to measure pain in people who are locked in and who are in a vegetative state.  I’ve been doing some research about this phenomena of being “locked in” because of my frontotemporal dementia.  I wonder what I will be able to feel once I am no longer able to communicate and no one is able communicate with me.

This is a picture of New Scientist Magazine.  I have found some really interesting articles in this publication.

In the article, “Coghill warns against disregarding someone’s description of pain in favour of an objective measure. In the US, insurance companies would jump on an objective method of measuring pain, but this could mean that certain people with different patterns of activation lose out,” he says. “We need to ensure that patients are never in a position where they are denied treatment.”

The idea that insurance companies might want to jump on the band wagon to use this tool to deny chronic pain patients treatments and meds is a real possibility as those of us with chronic pain know all too well.

The last part of the article discusses whether pain is a symptom or a disease.  After much research and many discussions with a very intelligent pain management doctor who is always “up” on the latest research, I have concluded that pain is not just a symptom but a disease.  Remember about the finding I discussed earlier how in chronic pain, these pain signals latch on to all sorts of neurological responses?

The researchers mentioned in the article agree that  chronic pain is associated with functional, structural and chemical changes in the brain which redefines pain as a disease.

Let’s hope that further research continues to validate that chronic pain in reality is a complex disease that needs to be treated.  It affects the lives of millions of people all over the world.

Chronic pain- Recent Updates


Hi everyone,

Recently, I’ve been having a difficult time with various illnesses  so I am a little behind on posting.  I have found multiple articles that may be helpful to those of you with chronic pain.

First let’s discuss slow breathing might help pain.  I first learned about this practice in prenatal classes prior to the birth of my first-born.  Imagine the scene on of Alien when Sigourney Weaver’s guts were being ripped apart by the alien.  Slow breathing did little to help 13 hours of Pitocin induced hard labor.

Fortunately, I have found tha slow breathing can be affective for chronic pain as well as anxiety attacks related to my FTD.  The author also mentions mindfulness exercises which I do incorporate with slow breathing.

Try to sit in a relaxed position.  Breathe slowly and concentrate on each breath and how it feels as it goes in and out .

Regarding mindfulness exercises, the mind is a wild horse and it takes awhile to “break it in.”  If you continue practicing mindfulness exercises which can be something as simple as repeating one syllable phrases over and over again, the results you will gain in helping to control your pain will be well worth the time.

The next article is Tattletale Pills Remind You to Take Your Medication.  Two topics are discussed.

Companies are using wireless technology to develop devices that monitor whether you take your pills.  One way people may be doing this in the future is swallowing a microchip about as thin as a few human hairs.

Over a two-year period, it became increasingly difficult for me to remember to take my medicines and take the correct dosage.  Fortunately, Selch has worked out a system that makes it easier to make sure I receive correct dosages at the correct times.  He bought a large square pillbox that has little boxes for each day of the week and boxes for morning, lunch, afternoon and bedtime.

He or my aide have to pour my meds which also include pouring  liquid pain medicine  into small plastic bottles for each time I need to take a dose.  Even though we have an organized system, someone still has to remind me to take my meds.

The author of the article writes about  a pill that, once ingested, wirelessly transmits information about side effects and how well it’s working. 

Information is sent it back in a readable form to a cell phone or e-mail account.

I wonder if it also tracks any information about side effects that may occur?  The author writes it might be available as soon as the end of 2011 but I imagine that it will be first  for the kind of medication that gets the most attention and research funding such as cardiac meds.  Still, if it works, it may be able to benefit those of us who take medication for chronic pain and FTD within the next five years.

The other invention discussed in the article is the GlowCap that helps people remember to take their medication.

If I was still taking my meds from a bottle,  I don’t think I would see the glowing orange light.  Also what “melody” are they talking about?  Have you ever seen the movei, “Little Shop Around the Corner?”  Jimmy Stewart plays the head clerk.  The manager bought a large amount of cigar or cigarette boxes that play a melody when the person opens the box.  No one wants to buy them and Margaret Sullivan ends up getting a job as a clerk in the store because she convinces a woman to buy the box by telling her that it is a candy box.  When you open the box to take a piece of candy, the melody plays so it reminds you not to eat too much chocolate.

The next article is New Extended Hydromorphone approved.  Hydromorphone is also known is Dilaudid which is one of the medications I take in liquid form for breakthrough pain.

Dilaudid, in past research, is known to be a short acting medication so an extended release version I think is definitely a plus for chronic pain sufferers because Dilaudid can be very affective in helping pain.  It works by making the person feel like the pain is not as bad as it is.

As Karen says, Exaglo is being released under the REMS program which we in the chronic pain have been welcoming like the plague.

The company that developed Exaglo is CombinatoRx, Incorporated (CRXX) which develops novel drug candidates with a focus on the treatment of pain and inflammation.

An article in Bioworld says Exalgo’s REMS  includes “safe-use tools” for prescribers, patients and pharmacists to ensure the “right patients” get the drug and at the appropriate dosages, he said.

Neuman noted that Exalgo’s REMS is less restrictive than the one Covidien initially had recommended to the FDA, which currently is working on developing a classwide opioid REMS.

As I have explained in previous articles, REMS for other specific long acting narcotics as they stand now are very restrictive and will certainly cause many physicians to stop prescribing these narcotics and many pharmacies to stop dispensing these narcotics.

In Pain, they outline the REM requirements for Exalgo.  They sound much like the REM plans for other narcotics.  I am concerned that even if a doctor agrees to enroll in the Alliance program and patients agree to enroll in the program that pharmacists will not enroll in the program.

Let me give you a personal example.

We have recently moved and Sech went to the local CVS to get my pain meds. filled.  We had no problem in obtaining the medication at the pharmacy in the previous state  where we lived . All CVS stores order from the same distributors.  Selch spent three weeks getting the run around from our new local CVS pharmacist before he finally agreed to order my medication.  When Selch brought the meds home, he opened the sack up to discover that the pharmacist had given me the Mylan Fentanyl patches although Selch had specifically ordered the Sandoz patches.  Mylan do not work as well for me.  I am not putting them down, to each his/her own and I bless what ever works for you.

The pharmacists said that Sandoz patches were not available.  CVS stores nationwide order from same distributor.  This does not compute.  If this is the attitude of pharmacists now will they be willing to enroll in this Alliance Program?

Notice in the Pain Topics commentary that” FDA Briefing Material for the meeting  provides no data indicating exceptional abuse liability for hydromorphone and  a clinical study conducted in only 9 subjects that found hydromorphone was no different in abuse potential than hydrocodone or oxycodone.”

Also, “hydromorphone products accounted for less than 1% of nonmedical use of all pharmaceuticals, less than 3% of such cases involving opioid agents, and it was implicated in less than 1% of all drug-related suicide attempts.”

I agree that data does not call for such a restrictive program for this new drug.  Lack of data has never stopped the feds from involving themselves in the practice of medicine and trying to persuade physicians not to prescribe narcotics.  Remember the  DEA practice ofraiding of doctor’s offices a few years ago?

The author of Pain Topics asks, “Will there eventually be separate REMS programs for every opioid analgesic, each with its own registration requirements and prescribing procedures?”

Unfortunately, I say yes there will be if they have their way about things.  I don’t know what drives the DEA and the FDA to practices that are and will keep more and more chronic pain patients from receiving their pain medications.

They consider those of us who need narcotics to have any quality of life an acceptable sacrifice for their stated agenda which is  to keep people from abusing prescribed pain medication.  Even their own studies and data do not show that there is significant abuse in people who take prescribed pain medication.

Taking pain medication away from people who need in it in hopes that it will keep people from abusing drugs(who are taking their relative’s and friend’s pain meds)  is not realistic.  When you cut off one source, people who abuse narcotics will just find another source for their habit. Despite the “War on Drugs,” narcotics are plentiful.  So what have they accomplished?

Are these agencies that naive or is this a power agenda?

I have no idea, but we as chronic pain patients need to tell everyone we know what is going onand  we or our loved ones who understand what is going on need to write our congressmen.  I understand that we are all victims.  We are victims of our illness and victims of the medical and governmental system.  But, the only way I  see that we can make a difference is if we ban together and tell anyone who might be able to help us in our cause for the right to have adequate pain relief.

There are some rays of hope in this darkness of denial such as the MayDay Pain Project.  John Stossel recently did a program about the plight of chronic pain patients, War on Pain.  It was on the Fox Business Channel so most of us were unable to see it.   To watch the program go here.

One of the physicians in the practice where I go for pain management is involved in the MayDay project.

Let’s all pray that someday soon this world will WAKE UP.  Until then, remember we are all brothers and sisters united by our souls.  Whether you believe it or not the thoughts that we think may affect our reality so try to think positive thoughts.  I’ll be thinking positive thoughts for all of you and know that you are always in my prayers.

Do we really want socialized medicine?


I’ve known about the perils of socialized medicine for years.  I use to work in the health care community and I heard horror stories from doctors and nurses who had lived in a country where there is socialized medicine.  I just read an article called Annals of Government Medicine. It paints an accurate  picture of problems with Socialized Medicine.

The people who want to cram socialized medicine down our throats say,”Take this, I know it doesn’t taste good but Mommy or Daddy knows what is best for you.”

To me a “nanny state” means we get thrown off to some “nanny” i.e. the government who is getting paid to take care of us.  She will most not likely treat us like we are her own, encourage free thinking or independence.  If we are able to go out and stand up for ourselves, she no longer has a job.

Anti-depressants may not work


I just read an article in Newsweek that says antidepressants may be no more effective than placebos. I have been on several antidepressants.  My relationship with antidepressants started when I was having moderate situational depression.  The doctor tried putting me on three or four antidepressants but none of them helped and I had the additional burden of side effects along with depression.

The only thing that helped my depression was getting out of the situation.  But, I have talked to many people who swear that antidepressants help them so I’ve always thought if they work for them and they suffer no side effects then I wish them the best of luck.

After I developed symptoms that could not be explained, physicians that I saw always pushed antidepressants.  They told me they weren’t saying that everything was in my head and that anti-depressants actually had been shown to help my symptoms.

I gave them another go round.  Again, nothing but side effects.  So, I started refusing antidepressants.

Then, my doctor diagnosed me with complex regional pain syndrome.  He has a very scientific way of thinking and explained to me in a scientific manner why antidepressants work.  So once again I hopped on the horse.  This time my companion was Cymbalta.  For the first two weeks, I actually felt better.  I happened to be on vacation in No Where’s Ville, Pennsylvania when I had a severe anxiety reaction due to Cymbalta.  My physician advised that I immediately stopped taking it.

After that, I started doing some research of my own regarding side effects of antidepressants, reading some studies and reading  lots of testimony from other patients that  made me realize that antidepressants can have some major side effects, even suicidal ideation.

Since then, the only thing I have let my doctor prescribe in the anti-depressant category is Trazadone in a very small dose to help me sleep at bedtime.

I have been mostly focused on side effects of anti-depressants in recent years and haven’t paid that much attention as to whether they worked or not.  Many people said that they really work for them and who am I to judge?

I do remember reading a study that said the body adjusts quickly to change in serotonin levels.  I also read recently that serotonin levels are not the hallmark for depression that everyone has been thinking they are.

The article in Newsweek says that studies show that anti-depressants are no better than placebos.  I believe we all have the ability for self healing if we are able to have faith.  Perhaps there is something to the placebo effect and no one should be concerned or ashamed if it truly is a placebo effect.

I am  concerned  that when everyone starts reading this article , they might discount the placebo affect and perhaps not feel as well.  I suggest reading the writings of Edgar Cayce if you are open minded.  His abilities are an example of how the mind does have the power to heal.

I grew up in church where they told us that healing only came through Jesus.  Now I do believe that healing does come from God but the power to heal has been given to all of us.

Remember the passage in the Bible that said if you have the faith of a mustard seed you could move mountains.  I think so.

I once knew a man who had the “gift” of healing.  He knew this gift came from God and everyone has the potential ability to “heal.”  It is one of God’s gifts to humanity.

I cannot say whether antidepressants work for others or not.  In the article someone asked why would the FDA would approve antidepressants if they didn’t work?  The FDA has a huge political agenda and they are not always looking out for the best interest of the people.  See FDA REMS and the fact that they have blocked two new pain medications that might help chronic pain patients.

Please if you are on an anti-depressant, talk to your doctor before you decide to stop taking your medication.  If you get off antidepressants suddenly it can cause serious withdrawal symptoms that could be life threatening.

Long Term use of Opioids in people with chronic pain


As you are aware if you have read about me and my posts, I have been taking narcotics for many years.  After much research and several discussions with my pain management specialist I am convinced that it is safe to use opioids in long term treatment for chronic pain.  An article in Medscape  says there is little risk of addiction from long term use in “select” chronic pain patients. Only (0.27%) of 2613 patients in the studies reviewed who received opioids for CNCP for at least 6 months reportedly developed an addiction to the medication.

The author also mentioned that many people withdrew from the study because lack of pain control and various side effects caused by the pain medication.  This is always a problem when treating chronic pain patients.  Multiple medications and combinations of medications and different dosages as well as route of administration may have to be considered before the patient starts receiving ongoing adequate relief.  Finding the right medication may be difficult in the beginning .  I know it was for me, but because I had exhausted all other avenues of treatment, I stuck with taking prescribed narcotics for pain management and my doctor and worked as a team to find the correct medications for me.

One concern for patients on long term opioid treatment is drug monitoring being done by many physicians. Relying on urine drug screening and testing for managing opioid-analgesic therapy in patients with chronic  pain causes unrecognized problems and challenges.

At least two small studies have found that physicians ordering urine drug screens to monitor patients on long-term opioid therapy typically are not proficient in interpreting the results according to the article about pitfalls of using urine screening tests.

While those who are for urine drug screening have a list of justifiable reasons for doing the tests,  testing results can be complicated and often misleading, leading to delays in patients receiving medications as well as problems in doctor/ patient relationships.  In a previous post I described my frustration about having to wait for a urine screening the entire afternoon in the doctor’s waiting room and I was only “discovered” to be still there when a nurse came to lock the front door at the end of the day.

The article explains many reasons why results of urine tests can be misinterpreted.  This may cause physicians to wrongly label a patient as a drug abuser and punish them by even closer monitoring or worse dismissal of the patient from the doctor’s care.  If the doctor receives positive test results all factors should be considered by reviewing the patient’s history and having a discussion with the patient before any drastic action is taken.  Remember a discharge of a patient by a pain management doctor is a black mark on the patient’s record which makes it difficult for the patient to find anyone else willing to treat their pain.

I read an article in Reuters that even legitimate usage of opioids can cause an overdose in patients. A study, published in the Annals of Internal Medicine was done by  researchers  who followed nearly 10,000 adults who had received at least three opioid prescriptions within 90 days to treat chronic pain.

Of these, 51 experienced at least one overdose, and six died as a result.  Reported studies such as  this one rarely discuss the specific circumstances of these overdoses, what other medications were taken and the co-morbid conditions that the patients might have.

The article states that “several million Americans now use opioids to relieve disabling chronic pain, and so even relatively small overdose rates could amount to thousands of overdoses every year.”  But in fact this does not happen.  Most patients who use opioids to relieve ongoing chronic pain are opioid tolerant which means their risk of overdosing on the narcotics is slim to none.

In the study, overdoses were particularly common among people who had a history of depression or substance abuse.  Remember the people who overdosed were a only a small number of people  in the study who took prescribed opioids.  A history of drug abuse or depression should be documented in the medical record and a physician should take this into an account when prescribing opioids.  This opens up another problem of lack of good historical information by the physician in the patient’s medical record.  I won’t further discuss that in this post as I have discussed the matter in other posts and probably will again in the future.

In “A Review Shows Opioids Relieve Chronic Pain With Little Addiction Risk,”  Meredith Noble, a senior research analyst at ECRI Institute, one of 14 evidence-based Practice Centers in the country under the U.S. Agency for Healthcare Research and Quality, and her colleagues reviewed the findings of 26 clinical studies comprising 4,893 participants of people who take prescribed narcotics on a long term basis.

They  wanted to look at studies  in which people who had chronic pain were treated  for six months or longer, given that chronic pain can go on for years. The review included studies of individuals on opioids for as long as 48 months.

In studies reporting abuse or addiction, only 7 out of 2613 patients reported that they took their medicine incorrectly or that they became addicted.

I agree with the results of the study, if patients are properly screened by history of problems of drug abuse or other complicating factors there is little risk of abuse or addiction.

In conclusion,  long term opioid treatment in chronic pain patients is safe with very little risk of overdose or abuse.

Living with FTD-Frustration of Diagnosis and Support for FTD Patients


I am going to be writing more posts on what it is like living with FTD in the near future.  This morning, I want to talk about a particular frustration that I share with some other people who have FTD as well as people whose loved ones have FTD.

The “typical” FTD patient according to most medical literature exhibits personality changes, “acting out behaviors”, denial and lack of insight about their illness.

In reality, symptoms of FTD can wildly vary among people who have the disease.  FTD is hard to diagnose because a person with FTD can show symptoms before actual brain damage shows up on an MRI or brain scan.

Even people who have typical symptoms often will be misdiagnosed as having psychiatric problems and spend valuable early years under the treatment of a psychiatrist and taking psych. meds that actually may make their FTD worse.

Most neurologists do not have the training to diagnose FTD.  People with FTD usually “pass” typical neurological examinations.  Thus, the neurologist tells the patient that he or she cannot find any neurological abnormality that explains their symptoms.

I have many FTD symptoms but as I mentioned above, I do not have the typical symptoms that doctors use to screen for FTD.  I’ve had unexplained neurological symptoms, anxiety, depression and increasing apathy towards activities of daily living for the last five years.

My husband and I went through Dante’s Medical Inferno trying to obtain diagnoses for my other illnesses (RSD, abdominal migraines, Celiac Sprue, Meniere’s Syndrome, etc.) I’ve met some physicians who belong on the inner rings of hell but after years of struggle I finally met a few doctors who are good Samaritans.  You will know when doctors get their angel wings every time that hell freezes over.  Okay I’m joking, sort of.

I was admitted to the hospital for unexplained neurological symptoms.  The neurologist came in with a gaggle of baby docs, did the usual neurological examination and said what so many have said before, “I don’t know what is wrong with you.”

My husband, a battle worn veteran of diagnostic warfare and physician retreat, requested that the neurologist order an MRI of my brain.  The neurologist complied.  Most doctors are willing to order an expensive test.  Why not, if the insurance company pays for it and they can be rid of a difficult case that could potential cost them time, money and liability by using  the authority of  The Test that will certainly show something if there is actually something wrong.

My MRI was consistent with FTD/shrinkage in the frontal and temporal lobes on the left side.  The neurologist had his own opinion.  Although he knew nothing about FTD, he told me that FTD was rare and I did not exhibit the symptoms so he was sure that I did not have FTD but I should follow up with another neurologist.

If, I had not been a professional patient then I probably would have gone to another neurologist who knew nothing about FTD.  I would have continued having greater difficulties with anxiety, depression, loss of speech.  When I started having auditory hallucinations then I would have probably been referred to a psychiatrist and  put on psychiatric medication that might make my FTD even worse.  My family totally baffled by these developments as I became incontinent and unable to speak would be advised by friends and the family physician that it was probably time to put me in a nursing home.  I might have died not ever knowing I had FTD.

As I mentioned, I belong to an FTD support group.  They are a really nice group of people almost all caregivers that provide a lot of good information and are very supportive to whoever joins the forum.

I am glad I found this group.  I can’t go out to a support group and there aren’t really any other FTD support groups online.  As the months passed, I discovered as many people do who have chronic, serious or terminal illnesses that I really wanted to talk to others who also had FTD.  It is great to have supportive friends but sometimes when your in this sort of situation you really want to talk to someone who is  down there in the trenches sinking in the same mud.

Fortunately, I met a very brave and compassionate woman who has FTD.  She’s made a documentary about families coping with FTD.  She invited me to a weekly chat group where I eventually met six other people with FTD.

Most medical literature says that the hallmark signs of FTD are acting out, personality changes, denial and lack of insight into illness.  Another FTD “researcher” told me despite my solid proof that I did indeed have FTD diagnosed at Johns Hopkins that I could not have FTD because of did not have these “hallmark” symptoms.  He told me he had reviewed 2000 cases (I later found out not actual people but autopsy slides of people) and all of them had the “hallmark” symptoms.

It is a fact that I have met a total of seven other people who have FTD, are able to communicate and have insight into their illness.  I realized if there are eight people who have FTD who did not have the classic early symptoms of FTD that neurologists use to screen for FTD then there are probably many people living their lives that are progressively becoming more difficult that don’t realize they have a terminal degenerative brain disease and they might have only a few more years to live.

This possibility really bothers me.  Most people who have terminal diseases have some forewarning even if it is a short period of time to say what they want to say to their loved ones and get their affairs in order.

No one knows when they are going to die and many people die in accidents.  Still it bugs me with all our modern medical technology that there may be thousands of people out there who don’t know that they have a devastating terminal illness.

Since most recognized FTD patients are unable to express their needs in a functional manner there is not the kind of support for FTD patients that there is for people with other terminal diseases.  Support for FTD on the Internet is primarily focused on caregivers.  I certainly agree that they need much  support but I think there should be more support in the medical community for FTD patients including those that are unable to communicate their needs.

Since FTD ,until recently, has been considered a rare disease even by FTD specialists, there are very few programs set up for FTD patients.  I wished that FTD patients were able to receive the same kind of support that Alzheimer’s patients are now receiving and that there were  more clinics that had programs and interaction for FTD patients.

New research in Alzheimer’s has also lead to new research in other neurogenerative diseases such as ALS, Parkinson’s and FTD.  I hope in the near future that there will be more programs for FTD patients.

Currently, FTD patients are treated with medications for symptoms.  Most FTD patients before they are diagnosed have been progressively having  increasing problems at their jobs and not long after they are diagnosed they end up having to go on leave or disability.  They remain at home with their families until their loved ones can no longer take care of them and then they are placed in nursing homes where they usually rapidly decline.

I have read about a lot of families that are wonderfully supportive and do everything they can to help their loved ones with FTD.  Also the Alzheimer’s Association has support groups for people with presenile dementia that people with FTD can attend.  Unfortunately, I am too disabled by my other illnesses to be able to attend a meeting.

Still, the burden of care and support remains with the families of loved ones.  If people with FTD don’t have loved ones that are able to take care of them and support them, they end up living alone until they cannot take care of themselves and then they are put into the nursing home.

I have not seen one article that addresses the possibility that there may be thousands of people who have FTD who do not know they have FTD because even FTD specialists rarely see “atypical” patients such as myself and the others who I have met who are “atypical” patients so they may not even know “atypical” patients exist.

It is a fact that there are people that have FTD who are able to communicate and have insight into our disease.  There must be others like us  who are probably falling through the cracks because they do not have the “hallmark” symptoms of FTD which are used as a screening tool for FTD.  Perhaps when FTD no longer is labeled as rare by most neurologist, this will occur to some physicians.

I read an article recently in which an FTD researcher speculated due to the new research breakthroughs they are making in discoveries about neurodegenrative diseases that the diagnosis of FTD may end up accounting for 65% of people who have presenile dementia.

I do not wish for anyone to have FTD but the more number of people who can be found that have FTD means larger amount of funding for further research and programs for people with FTD.

If people with FTD were like stars that scatter the universe and I was an angel, I would scoop them all up in my magical net and protect them under my wings.

I am one spiritual being who is having a human experience.  Part of my experience is living with FTD.  I do the only thing I am able which is  to tell people about what it is like living with FTD and giving support over the phone, the internet and always in my prayers.

Patient Medical Centered Home Demo


I just read a post titled Patient Medical Centered Home Demo.  This is about redesigning health care groups  with improvements that included same-day appointment scheduling, direct access to some specialists, primary care redesign to enhance care efficiency, variable physician compensation, and an electronic medical record with a patient Web portal to enable patient e-mail, online medication refills, and record review.

It appears that there was some  increased patient and physician satisfaction with this model.

It sounds promising and many services in the model move towards patient centered health care.

Writing a comment to FDA about proposed REMS


I received a response from a post I submitted on Chronic Pain Connection:

FDA REMS Proposal
Karen Lee Richards
Monday, January 18, 2010 at 09:55 PM

I would also encourage you and everyone concerned to write to the FDA.  They are taking comments from the public regarding these proposed REMS until Oct. 10, 2010.  Here’s a link to the FDA announcement.  Toward the bottom of the page of the FDA announcement is a link to their form if you’d like to submit it online and their address if you’d prefer to mail it.

Risk Evaluation and Mitigation Strategies for Certain Opioid Drugs

This will take you to another page where it asks you to choose which document you want to reply to.

Choose FDA and choose public announcements.  There will be several items to choose from.  Select  Risk Evaluation and Mitigation Stategies for Certain Opioid Drugs and then you will be taken to a page where you can place a comment.

If travel worked like health care


I invite you to watch this video on the page : If Travel Worked Like Health Care.

It might help you realize what a tangled web the government and insurance companies conceive when they practice to deceive.

Article on FDA REMS


I just read an article titled ” When Elephants Dance , Ants take a Pounding”.

“On December 4, 2009, the U.S. Food and Drug Administration (FDA) called upon pharmaceutical company representatives to report on their progress in developing a REMS (Risk Evaluation and Mitigation Strategy) for extended-release or long-acting opioid analgesic products containing oxycodone, morphine, methadone, and other agents. Concerned about what are perceived as high rates of misuse, abuse, addiction, and overdose with these powerful pain relievers, this is the first time the FDA has demanded a REMS program for an entire class of drugs.”

Many of the drug companies manufacturing the above mentioned narcotics have formed a  Industry Working Group (IWG) to try to deal with the problems of drug abuse  while still trying to assure that people such as chronic pain sufferers will still be able to get the medication they need to function in their every day lives.

The FDA gave these IWG’s little information to form a base to construct a plan even though the IWG members have spent many hours putting together a plan. You can read in the article about the proposed phased in plan

As the article points out, the problems are not with the people who take the prescribed drug but it is a community problem.  No matter what the FDA regulates there is still going to be abuse of “prescription” drugs.  The FDA thinks by keeping doctors from prescribing narcotics with abuse potential that it will stop people who abuse prescription drugs.

Some of these drugs may still be available on the street because of prescription narcotics prescribed overseas.

It is obvious to any thinking person, that people who abuse drugs if they do not have prescription narcotics available will obtain drugs from the “street.”

Some FDA officials have admitted that it is their goal to get doctors to stop prescribing these narcotics period.  They obviously do not care about the thousands of people like me who need narcotics to make their pain manageable so they can live day to day.

These officials have also admitted that it is their plan to put all of us who are prescribed these narcotics into a register and ration the amount of narcotics we receive.

Why, why, why do they want to do this? They have to know that we who responsiblity take narcotics under a doctor’s supervision are not drug abusers.  Or do they?  Have they bought in to the totemism of the “evil’ narcotic so far  that they believe even legitimate narcotic use should be stamped out?

Is it to prove that they have done “something” to address the war on drugs so their funding will be continued?

I have seen so much violation of constitutional individual rights in the past few years, I’m starting to not recognize this country as America, Land of the Free.

What can we do? We can do what our founding fathers afforded us the right to do.  We need to spread the word about what is going on as much as possible and join the consumer movement for health care reform.

We can write to all our congressmen and women and tell them our stories.  Also we can vote people out of office who will not stand up for our constitutional rights.

Even though I have a terminal illness, I for one will not roll over and give up.  Fortunately, there are physician practices and other foundations with strong political backing who are prepared to fight these proposed changes.

I’ve already read so many sad stories about people being undermedicated due to physician fears of governmental retribution.  I understand their fears and concerns, but to stop giving people medication that they need to survive before any action has been taken against their practice is inexcusable.

The DEA did raid doctor’s offices but the numbers were few and most cases were settled out of court.  It was enough to send many doctors rushing away like herd animals.  They should look at what actually going on now, not what they fear may happen.  While they can help people who are in horrible pain they should remember their oath and not turn people away who are in agonizing pain.

I believe physicians should stand by their patients and face what is coming together.  I still see humanity in some physician’s practices and I am old enough to remember when caring for the patient was the primary focus of the physician.

We need strong minded compassionate people in the medical field.  This is another reason why I believe that the best model for health care reform in a consumer based movement.  We have a right to good quality of care.

I let myself for a minute imagine the post apocalyptic world for chronic pain patients that would exist if the FDA is allowed to intact their plans.

Thousands of  people who suffer from chronic pain and chronic illnesses will be having to make life and death decisions.  Such actions would force those of us who chose to live and carry on with their responsibilities to seek our narcotics from an illegal market who would be more than willing to welcome us into its clutches.

Those without money to pay for these narcotics might be forced to do things that actual junkies do not because we wanted to get high but to survive.

Is that what the government wants, to send thousands more consumers into the illegal drug market?

Hopefully, it won’t come to this.  As I said, I do see promising signs that physicians and organizations are joining force to keep this legislation from being acted upon.

If you want to read more information on guidelines that the FDA is using to define chronic pain and treatment of chronic pain with narcotics see  The National Clearinghouse Guidelines, Managing chronic non-terminal pain including prescribing controlled substances.

I also want to remind readers that I do have another blog that I am starting.  It is called The Professional Patient.

The Patients’ right to their medical records


I’ve clearly stated my views previously that I believe that patients should have full access to their medical records.  Yesterday I read an interesting article, Patients Demand, “Give us our damned data.”

The first story in the article talks about a woman whose husband was transferred from one hospital to the other.  She had to run back to get his medical records from the first hospital so that he could get adequate pain relief.  The second hospital refused to give him pain medicine until they received his records from the first hospital.  Most people would assume that the staff from the first hospital could fax the records over to the other hospital but that isn’t the way things work.  The system for retrieval of medical records is broken and it long overdue to be fixed.

I have said before that I have a degree in Health Information Management.  Once upon a time having been a supervisor and then a department director of a medical record department, I saw how hard it was to keep track of medical records.  The strangest place I ever heard where some lost records in Texas were found was in the trunk of a medical resident’s care in Florida.

As described in the article there are other reasons for patients not being given their medical records.  When I left the field of information management, only two hospitals in the state had electronic medical records.

It does not look like things have gotten much better.  In many hospitals,  only parts of the record are converted into an electronic medium.  During my stays in the hospital as a patient, I saw nurses typing and clicking boxes online, then writing the same information in two different places.

I was in the hospital for a month with a deep venous thrombosis and by the end of my stay, despite their electronic checklists, they still didn’t have my medication correctly scheduled.

What happens when you are discharged from the hospital or you are seeing a physician at their office and you ask to receive a copy of your medical records?

As Ms. Cohen states in her article, there are federal laws that guarantee patients the right to their medical records.  This does not mean that patients will receive complete copies of their medical records in a timely fashion.

If you try to obtain your medical records of a recent hospital admission, you will be directed to the medical records department.  But as it is explained in the article, a clerk might tell you that you can’t have your records because they are not complete. They have usually 30 days to provide you with the medical record.  As the article says, if you need the records more quickly because you or your loved ones are in another hospital, have the attending physician request the records.  Hospital staff usually complies to requests when a patient has been readmitted to a hospital.  But, unfortunately, sometimes hospitals do not get the records in a timely fashion to the other facility.

I’ve been behind the scenes.  They aren’t lying when they say the record is not completed.  Many records come down from the floor without signed orders, without discharge summaries because the doctor has failed to dictate them yet or perhaps the record is still in processing and it hasn’t been put in proper order and not all reports have been filed into the record.  But after 30 days, it is reasonable to expect that the records should be complete.

Often the clerk will suggest if the record is incomplete that if you fill out a request for the medical records and write down the doctor they need to be sent to, they will send a copy of the records they have to the doctor who needs to see them.

If the clerk is able to make a copy of your medical record then you will be charged a fee.  After all it cost money to make copies (not as much as they charge but of course you have to figure in employee time, etc.)

When you try to obtain copies of medical records, you soon get the feeling that perhaps they don’t want you to have them.  That feeling you have is correct.  Hospitals and doctors always point the finger of privacy regarding medical records.  Afterall, they are trying to protect your records from falling into the wrong hands.  But, these are your hands you say.  What better hands to hold my record than my own? True, but doctors and hospitals really would you rather not have the information.  There may be something in the record that you may “misunderstand” to be a medical error.

Also if your record has been flagged because it is under review for anything such as utilization of services, quality of care or especially any possible litigation, you will be told that your record is not available to be copied at the time you request it.

What can you do?  As mentioned in the article there are many complaints to the Department of Health and Human Services.  What can they do? Not much.

The even more difficult records that you may need to obtain are the records from your physician’s office.  It is standard practice for office staff not to allow you to have copies of your records.  They will tell you it is their policy to only forward records to another doctor.

What you must do is find out the laws in your state regarding your rights to your medical record.  The laws vary from state to state and as  Ms. Cohen points out, some states grant you less access to your medical records than federal laws allow.

Once you know what rights you have to your record if the doctor’s office or hospital refuses to give you a copy of your record, then it would be a good idea to print out the law of your state regarding patient’s rights to their medical records.  You can usually find this information by googling laws in your state.  If you can’t find it, there should be a number that you can call listed on a state’s web page or call your local library.

After you have printed out the information, then “politely” demand the right to your records. As Ms. Cohen says, you may have to get “mean.”

As I stated above, your record may be flagged because it is to be reviewed by a committee for possible misuntilitization of services or a medical staff error involving your care.

I was admitted to the ER and overdosed with anti-emetics which caused me to come back to the hospital having major spasms and tremors.  We made a complaint to the hospital and I was not initially given access to my medical records until after we went to a scheduled meeting with an administrator in which he graciously apologized.

You may not even know a mistake has been made.  Hospitals are required to perform reviews on some  records in which they find “medical mistakes” even if there was no adverse outcome to the patient.   So you may not even know there was a mistake.  If you receive a vague answer as to why you cannot receive your regards according to federal and state laws then I suggest you keep going up the chain of command until you find someone who is willing to discuss why your record is not available.  If you have to make an appointment with an administrator so be it.  Also, in the case, the squeaky wheel theory does apply.

As for physician’s records, you may have done everything you possible can do to get your entire medical record and you may only end up getting a few pages of records.  This is because the doctor doesn’t really want to give you anything and you can’t prove what was in the record and what was not.  The main thing I am interested in when I obtain physician’s records is a summary of the visits and copies of all tests.

I thought when I had to leave the health care profession 13 years ago that by now physician’s offices and hospitals would surely have complete electronic medical records. I read the other day on average many states only have 13% of their medical records converted to entire medical records.

There are many reasons for this such as lack of doctor cooperation, hospitals having many different computers that can’t communicate with each other etc.  Physicians with office practices complain that it is too expensive to convert their medical records to electronic form but they really haven’t looked at all the possibilities.

There have been models of patient centered care in which the patient owns his or her complete electronic medical record and is able to carry it with them on a thumb drive.  The patient is in charge of their own records and can give information to who they want to give information to when they want to.  The results are promising.  Patients feel much more empowered as a team player in their medical care.

The government says that all medical records will have to be converted to an electronic form by 2014.  I hope that before then this growing grass roots movement of consumer based health care will direct that electronic medical records are a necessity and that everyone should have access to their medical record at all times.

Data that will be able to be generated by web based software from electronic medical records will help patients and doctors to be able to come to the right diagnosis quicker and provide information for the best paths for treatment.  This information will also show patterns in the way hospitals and doctors practice medicine and then people will be able to truly find the right doctor to provide the best diagnosis and treatment for their illness.

I suggest you watch this video  on this page: The Quantified Patient. One man talks about his journey obtaining medical information and treatment for his kidney cancer.

American Values and Health Care Reform


I just read an article about American Values and Health Care Reform and it inspired me to express my views about topics mentioned in this article.

The article is written by Thomas H. Murray, Ph.D.

He says “Most thoughtful Americans would have something meaningful to say about the values we should choose for the foundation of our system of health care. And by focusing on these fundamental considerations, perhaps we can deepen and broaden the discussion of values and public policy.”

First he discusses “liberty,” which I agree should be a value and a right we have regarding health care reform.  He mentions that this  includes” the freedom to choose a physician and the freedom for physicians to choose their practice setting and patients.”  I would go further to say that physicians should have the freedom to practice medicine in the best way possible to assure quality of care.  So many physicians are constrained now by insurance companies and governmental regulations that affect the way they practice medicine.

Examples of this are physicians who feel  like they have to practice defensive medicine because they are worried about liability.  This has lead to some group physicians practices looking at each patient as whether they might be a liability to their practice.  I experienced the outcome of this practice myself.  I found a young female physician who promised she would stick by me as long as it took to find out what was wrong with me.

I came to a follow-up appointment to find that she had already discharged me from her care.  She told me that she did not know what I was doing there because she had made it clear to me on the last visit that I should go to Johns Hopkins and she was discharging me from care.  I was very ill and I burst into tears and told her I knew that had not happened.  She confided in me that she had presented my case in a weekly case discussion, hoping to get feedback from other more experienced doctors.  She was told to “get rid of me,” and that I was too much of a liability to the practice.

Others such as doctors who treat people with chronic pain are wrapped in bureaucratic tape due to previous actions by the DEA and REM’s instituted by the FDA for narcotics that take away the freedom to prescribe medications for the maximum benefit of the patient.  Any chronic pain patient can tell you about the infamous “pain contract” with doctors and the hoops we are forced to jump through to obtain our medicine.

Dr. Murray discusses, ” Under our current system, a young entrepreneur with a brilliant idea for a new business, a creative vision that can create jobs and wealth, can’t necessarily follow that vision: if this person has a job at a large firm that provides good health insurance and has a child or a spouse with a chronic illness, the aspiring entrepreneur’s freedom to pursue his or her dream is severely limited by the “job lock” imposed by our current patchwork of health insurance.”

I’ve had personal experience regarding this situation when I was younger.  My former husband was self-employed.  I  had a few opportunities to get in on the ground floor of a start up coding consultant companies that began to flourish in the late 80’s, but I couldn’t even consider it because I had pre-existing health conditions that would have made it impossible for us to buy individual health insurance at a reasonable price.

Mycurrent  husband and I have constantly had to worry about insurance coverage since I have become ill. Due to the contract nature of his work at times, the actual company he has worked for sometimes hasn’t provided insurance. There was a stretch of time in which we were paying over $2000 dollars a month just for prescriptions.

Despite the fact that I have a terminal illness, I still haven’t been able to qualify for disability.  I’m about to talk to another attorney  about the possibility but due to SSI’s policy of giving strong consideration for disability regarding evidence of disability in my medical records for the first three years after I became unemployed, I have not been able to qualify because  I was first disabled due to a complex regional pain syndrome and we saw many physicians until 2003 when it was fianlly diagnosed.  This is an example of governmental involvement in health care benefits.

Dr. Murray also discusses values such as  justice and fairness, responsibility, medical progress, privacy, and physician integrity.    Should every American be required to participate in health insurance?  I have a problem when lower middle class and middle class people are going to be forced to buy health care insurance when they are already being taxed for Medicare and Medicaid.  Where is the extra money for premiums supposed to come from?  Many families have at least one spouse who is out of work.  The poverty line is around $11,000.  There is no significant special funded provided in this bill for middle class families.

Dr. Murray writes, “What are our obligations to ensure that the resources devoted to health care will be used wisely? Will a universal health care system provide for appropriate utilization of services while ensuring quality of care of all patients.?”  If you look at most universal health care plans adopted by other countries, quality of care has suffered dramatically.  Patients have to wait months to see specialists or to have surgery.

Two years ago, I had a large deep venous thrombosis and was in the hospital for a month.  I read posts by people in the U.K.  and other countries that were still having complications from their DVT after two years.  Some of them were still waiting to have surgery.

Dr. Murray discusses The Emergency Medical Treatment Act  which requires that emergency rooms provide treatment without regard to ability to pay. Have we done enough with our health care system to provide for human decency when as Dr. Murray states, ” According to the Institute of Medicine,20,000 people a year die for want of health insurance. Thus, one of the key challenges of health care reform is to make certain that appropriate care is available to every member of our community when needed.”

What is the definition of appropriate care?  With the current health care system many people do not receive appropriate care.  The problem with Universal Health Care is that “appropriate care” only means that everyone has access to care.  This country already has a shortage of doctors and with the initiation of Universal Health Care many doctors will abandon ship.  This will leave physician assistants and nurse practitioners to provide for much of primary health care given to patients.  They will be overworked  and underpaid.  There will also be a shortage of people who want to work in a system where there are long lines of sick patients to take care of and low wages for their efforts.

Also, specialists will be more scarce and to try to save money, the healthcare system will prevent patients from seeing specialists as much as possible.

If you don’t believe me, read stories of chronically ill patients who have tried to receive good health care through HMO’s.  If you are a healthy person, HMO’s work wonderfully.  You only need to see a primary care physician and there is little out of cost expense for preventative medicine.  Chronically ill patients and patients who are seriously ill cost the system more money.

I use to review records for quality of care in HMO’s and I saw many cases of primary care physicians or usually a physician assistant or nurse practitioner putting off appointments for patients to get in to see a specialist.  Also, abnormal test results were often overlooked and not discovered until two or three visits later.  You will see with any program of universal health care that health care must be rationed so expense procedures and tests will often be delayed.

Dr Murray states, “But if everyone is to receive care when it is needed, fairness and responsibility also require that everyone participate in financing it. In its 1993 report, “Genetic Information and Health Insurance,”4 a task force of the Human Genome Project’s Ethical, Legal, and Social Issues Working Group proposed the concept of universal participation. Insurers who recoiled at the idea of universal access accepted universal participation as a legitimate goal. To them, universal access meant that healthy people could skate along without paying any premiums — until they got sick, at which point insurers would have a legal obligation to enroll them and pay their medical bills.”

Everyone can see the obvious problems that arise with that system.  Dr. Murray continues, ” Only people who expect to file insurance claims would voluntarily buy policies. A policy of universal participation eliminates adverse selection. And “universal participation” is a more accurate and inclusive term than “universal mandate,” which addresses only the individual’s obligation, not the national commitment to assuring that care will be available when and where it is needed.”

Len Nichols, director of the Health Policy Program at the New America Foundation, recently invoked the Old Testament in discussing stewardship. ” When food is more than sufficient to feed all, allowing some people to starve is indecent and represents a failure to live up to universal moral duties.Dr. Murray writes “To Nichols, the principle concerning the availability of food in Leviticus should be applied to health care today: just as the gleaners of Leviticus should not starve, so people in need of basic, effective health care should not be allowed to suffer and die. Stewardship requires us to be mindful of the basic needs of others and of the power and responsibility we have to use the resources in our control to meet those needs.”

He says “Stewardship therefore requires that we pay scrupulous attention to quality, efficiency, and cost-effectiveness — or value, to use the market’s sense of the term. The evidence that we do not get good value for our money — that our health outcomes fall far short of those in many other countries, that regional variations in expenses do not track variations in quality, that our hospitals too often fail to ensure consistent adherence to practices known to enhance quality (such as hand washing) — is overwhelming. Everyone entrusted with the leadership of our health care institutions and with the allocation of our health care dollars has an obligation to be a thoughtful steward of those scarce resources.”

Will the government be able to initiate such programs to ensure quality of care? As I have stated before, there was  a program the government initiated through the Health Care Financing Administration that contracted a company that I worked for to do “peer review” screening of Medicare, Medicaid patients  by reviewing their medical records for proper utilization of services, proper coding of diagnoses to insure accurate billing and most importantly screening for quality of care issues.

I pre-screened these records for physicians and then the physician would review the records with potential problems.  In many ways the program fell short. Within the 10 year period that records were reviewed, fewer and fewer records were selected due to budget constraints and pressure from lobbyists.  I believe the fact that the program  existed did improve over all utilization of services and quality of care in hospitals.  Unfortunately, the government abandoned the program.

Also, very few physicians or hospitals were actual sanctioned at the state level even though some major patterns of poor quality of care were found.  Also, results of these studies as well as any quality review that hospitals and physicians do within their hospitals and practices are “protected” from public viewing.

The rationale behind this practice is that physicians or hospitals would unfairly be targeted due to unavoidable mistakes and that if results were given to the public, doctors and allied health care personnel would be less likely to participate in quality review.

First of all, I think participation in quality review should be mandatory.  The patient is being provided a service.  Therefore they are the true customer and deserve to receive information regarding performance standards.  Too many doctors and hospitals mistakenly think that the insurance company is their customer because that is who pays them.

Physicians say that practicing medicine is different from any other service such as providing tax information, car repair, etc. but the fact that they do provide a service to their customer, the patient, should allow for patients to be given information about quality of services so they know who may be able to best serve them.

I don’t think physicians should be penalized for every mistake they make but as baby boomers are getting older, I believe they would demand the same kind of service that they have come to expect in other areas.

I think that it will take a long time to  enact universal health care.  The government is trying to plan it so the entire universal health care program is not actually enacted until after the election of 2012.  But, I think people are already being fed up  by governmenal interferance and will not welcome even by preliminary actions because the country is in such a difficult mess as it is.

Dr. Murray states, “The bill likely to emerge from Congress will probably do a better job of moving us toward universal participation than of ensuring proper stewardship of our health care resources.”    Perhaps, repitition of services can be eliminated.  That contributes in a major way to cost of health care.  “Proper stewradship of health care resources?  I seriously doubt that will happen with a federally governmentally run health care system for reasons I have explained above.  Also, consider all the bureaucracy that comes with governemental intervention, constitutional issues and the program being able to work with state laws regarding health care.

It will be a very interesting endevor.

Prescribed drugs versus generic equivalents


All of us who have a chronic illness have been faced with the decision to have a medication filled as the doctor prescribed or buy a generic equivalent.  Many times when doctors write a prescription, they check a box that allows for a generic equivalent of the drug to be prescribed.  A generic equivalent of a drug is supposed to be the same drug made by a different manufacturer usually at a cheaper price.

But does the generic equivalent allows work exactly like the originally prescribed drug?

A recent article in the NY Times, “Not All Drugs Are the Same After All”, discusses this issue.

According to F.D.A. rules, the new generic version must “have the same active ingredient, strength and dosage form” as the brand name or reference product.

The article provides a good discussion about whether or not this means that the generic equivalent works the same way as the prescribed drug when used in treatment of a patient’s symptoms.

From my own experience, results using generic drugs have been mixed.  In recent years, most of my physicians have allowed for generic equivalents for the drugs they prescribe.

Some physicians may lean towards using the prescribed drug but they are assured by studies given to them by pharmaceutical representatives that the generic equivalent is safe and effective.  They don’t have time to stop and think that these studies are done by the manufacturers and it is in their best interest for the studies to show that generic equivalents are equal to the originally prescribed drugs.

Also, many insurance companies refuse to pay for the more expensive “brand name” drug. These factors give the doctors incentive to prescribe generic equivalents.

I first noticed that there might be a problem with taking a generic equivalent when I was prescribed Cipro by my doctor for a urinary tract infection.   At that time Cipro was expensive and I didn’t have prescription insurance so I opted for the generic equivalent.  I took the medication as prescribed but after 10 days I still had symptoms of a urinary tract infection.

I made a follow-up appointment to see the doctor.  He had ordered a urine culture and sensitivity which shows specific bacteria and which drugs are likely to be the most effective in treating the infection.  He scratched his head and told me that the Cipro should have worked.

He looked at my chart and saw that I had an allergy to sulfa drugs.  Antibiotics with sulfa are used often for treatment of urinary tract infections.

He told me that he couldn’t but me on sulfa and some of the other antibiotics that he might consider I had problems taking them in the past due to stomach trouble.  The doctor said Cipro should have been the target drug for me.

Then he asked me, did I take Cipro as prescribed or did I choose to take a generic equivalent.  I admitted that I had taken the generic equivalent in consideration of cost of the medicine.

He suggested I  “bite the bullet” and pay for the Cipro as prescribed.  He explained to me that generic equivalents do not always work as well as the original drug because the manufacturers are allowed some variations in the way they make the generic equivalent.

After taking the new prescription of Cipro for three days, my symptoms disappeared and I finished taking the medication as prescribed by the physician.

For the most part, generic equivalents have been satisfactory in treating my symptoms.

When I first began to develop my complex regional pain syndrome, my primary care physician prescribed Percocet.  The pharmacy filled the prescription as Percocet.  I took it as prescribed and it did help to relieve my pain.

Because of ongoing pain problems, I was admitted to the hospital and was seen by a doctor who was a pain management specialist.  He ordered some injections of various medications and for the first time in a long time my pain was under control.

He suggested that I see him after I got out of the hospital.  Unfortunately, when I called to make an appointment, I was told that he did not have an opening for a new patient for three months.  They offered to make an appointment with a doctor who had just joined the practice.

He came in to see me and I talked to him about new medications the other doctor had suggested I might try.  He explained that he was hesitant to give me any narcotics for pain relief.  I asked him if could at least give me Percocet because it had helped decrease my pain in the past.  He said he would increase the dosage of Percocet, allow me a larger quantity and that should help my pain.

After I received my prescription at the pharmacy, I discovered that it was a generic equivalent. I didn’t think much about it because I had taken many generic equivalents.

After a few days of taking the medication, I did not obtain the same relief from pain that I had previously even though the dosage was higher and I was able to take the medication more frequently.  Also, the new medication made me sick to my stomach although the original Percocet had only made me feel slightly nauseated.

I called the doctor back a few times but he refused to give me anything else for pain.

I didn’t remain under the care of this physician for much longer.  I do think that the generic equivalent didn’t work as well as the original Percocet.

These problems I have had using generic equivalents have not stopped me from using them. For the higher priced medication that I take, if a generic equivalent is available, the insurance will refuse to pay for the prescribed “name” medication.

Using generic equivalents has usually not posed a problem for me.  There have been a few instances that a doctor wrote a letter to the insurance company because he or she insisted that I have the medication as prescribed.

When doctors do this, there is usually a good reason for it such as they have had past experience with less than optimal results for patients taking the generic form of the drug. Doctors do not like doing paperwork so for them to go out of their way to write a letter to an insurance company regarding non-payment for a certain prescription drug means that not receiving that medication is having an impact on the patient’s recovery from symptoms.

For the past two years, I have had a continuing problem with my Fentanyl medication because my insurance company refuses to pay for the expensive Duragesic brand name.

The problem is not with the Fentanyl itself but with the adhesive in the patch.  Pharmacies usually offer at least of couple of generic brands for Fentanyl.  The Mylan patch is a smaller patch that contains Fentanyl. The Fentanyl is not distributed in a clear pouch like the Duragesic brand.  It is coated in the Mylan patches.

Some patients prefer Mylan patches because they are smaller and because of the way the Fentanyl is distributed in layers of the patch, the patch can be cut so the user under a doctor’s supervision is able to cut the patch down to a smaller dose.  This gives people who are trying to reduce the amount of Fentanyl they are taking the advantage of decreasing the dosage in smaller steps than are provided for with the regular strength of patches.  For instance someone who is taking 75 mcg. patch and needs to reduce their dosage with the Mylan patch they do not have to go all the way down to the next available lower dosage patch which is 50 mcg.  They can cut the patch under supervision from their doctor to a lower dosage that is higher than 50 mcg.

I have never been in the position to need to lower my dosage.  I was given the Mylan patch by a pharmacy twice because that was the only brand they had in stock and in the hospital once because it was the only brand they had in stock.  I did not like the Mylan patches.

I wear the patches on my back and the patches did not stick as well nor did they provide the amount of Fentanyl delivery to my system that I was accustomed to.

For many years I have used the Sandoz generic Fentanyl patch without any problems. It is similar to the Duragesic patch with the clear pouch.

A little over a year ago, Sandoz changed something regarding the adhesive for the patch.  After that, I started having trouble with itching, redness and irritation at the patch site.

I tried wearing the patches in different locations but due to fat stores because of recent weight gain, the Fentanyl was being stored in the fat and was not being delivered at the same rate to my blood stream.  I had increased pain and withdrawal symptoms.

So my husband has had to become aggressive about making sure ever bit of adhesive is removed from my skin after taking off a patch and we have had to change the placement of my patches more to the side.

Some may consider this only a small inconvenience but any inconvenience causes more stress which as you know leads to more pain and other problems in someone with a chronic illness.

I hope this post has provided some issues for you to think about when you choose whether or not to use a generic equivalent that may help you in receiving optimal care for your condition.  Always consult your doctor before you make any decision on changing medication.

Forcing people to buy healthcare insurance


Today I read an article in the Los Angeles Times about forcing people to pay for insurance coverage. See the following article:,0,3694244.story

Any time the government starts requiring people to buy health insurance coverage I am afraid that we are heading down a slippery slope.  As the article discusses you run into the problem of young healthy people having to pay for elderly people who are sicker as well as people who have chronic illnesses who use more health care resources.

The problem is with governmental involvement as we’ve already seen with Medicare and Medicaid, is that everyone who is working has to already pay higher taxes to keep these programs going.

Low middle-income to middle-class income families are already feeling like they are overtaxed for existing programs.  To ask these people who are getting by day by day to pay for mandated insurance coverage in addition to taxes they already pay for existing programs is going to reduce the amount of money consumers have to pay for goods and services that drive the economy.

The government proposes that perhaps young healthier people would be able to pay lower premiums that would provide less coverage. That still doesn’t answer the problem for these families when someone in their family has a major illness.

If these people are still paying taxes for existing programs and having to pay for the healthcare mandated insurance premium where are they going to get the money to pay for healthcare expenses that are not covered by their policy?

Also, every time the government gets involved in any industry the people end up having to pay more money for all  the added bureaucracy that goes along with governmental involvement.  Red tape includes additional staffing to deal with paperwork required by the federal government and additional people to oversee the people who deal with red tape and paperwork. It’s a never-ending cycle of waste and confusion.

Considering my experience with working in the healthcare industry and also working for a company that contracted with HCFA in addition to my struggle in finding treatment for my illnesses, I feel that the government should be kept  out of the healthcare industry as much as possible.

For example, one reason the government and insurance companies became involved in the way that doctors practice medicine was because of the cost of lengthy inpatient hospital stays.  So the government started requiring hospitals to discharge Medicare and Medicaid patients within preset time limits. These limits were based on guidelines set by predetermined diagnosis related groupings based on the diagnosis of the patient including comorbid conditions.

Unfortunately, this reduced the quality of care received by some patients. This required the government to add additional expenses to the taxpayer to fund peer-reviewed organizations to monitor quality of care that patients received.

The cost of care was then shifted to outpatient care.  The intention was to reduce healthcare costs. Due to the fact that patients go to see different healthcare providers for different health problems,  tests are duplicated at each health care provider that the patient sees.

Insurance companies followed this practice.  So, instead of bringing the patient into the hospital and having several specialists see the patient during the hospital stay and then being discharged. Patients go from provider to provider where tests are duplicated and there is no continuity of care.

I can say from my own experience as a patient having complicated GI symptoms, that I spent years going from doctor to doctor trying to find out what was wrong.  Even when the doctor admitted me to the hospital, he or she did not call in life specialist to get to the bottom of what was wrong with me.

Instead, each doctor repeated the same lab tests and C.T. scans every time I went to see a different doctor.

A big problem is that there is no centralized medical record containing the patient’s history.  I think this problem could be solved by a service that would provide the healthcare consumer with an ongoing copy of their electronic medical record put onto a disc that the doctor could insert into his computer.  That would provide an updated history and test results for the patient. The doctor then would not have to waste the time and money going over histories and ordering additional tests.

I believe the key to successful healthcare reform would be a consumer driven healthcare system that allowed doctors to practice medicine the way medicine should be practiced.  If the consumer was made aware of all the information in the record and the doctor acted as an advocate to help the patient understand any question the patient might have about their healthcare, this would decrease this communication and misunderstandings that increase the cost of health care.

Once information was invited to the consumer, it would be in the doctor’s best interest to provide good-quality of care to the patient. There would also be an incentive for providers to reduce cost of care.  This incentive would come from the knowledge that patients had of care that was being provided them by health care providers.

The outdated model of doctors keeping information from their patients in the best interests of the patient is outdated. People are use to seeking information from the Internet and with the consumer driven movement of healthcare announced enough resources would be available to help the patient understand the care that they are receiving.

Want to Really Improve Health Care?


Via Instapundit:  The post at, The Doom that Fell Upon Medical Progress in the US, only touches upon the tip of the iceberg of the needless human suffering caused by the exploitation of patients — the consumers — by “our” medical system.  In the underlying post they cite, American Healthcare Facialism, Prof.  DiLorenzo from the Ludwig von Mises Institute captures more of the problem, from a political and bureaucratic perspective, caused by state interference.

The problem is older and more deeply rooted in human nature.  G. B. Shaw observed in 1902:

No doctor dare accuse another of malpractice. … But the effect of this state of things is to make the medical profession a conspiracy to hide its own shortcomings.  No doubt the same may be said of all professions.  They are all conspiracies against the laity and I do not suggest that the medical conspiracy is either better or worse … but it may be less suspect.

The medical community’s monopoly is based on technical knowledge that was wholly their property.  The laity was largely prevented from acquiring this knowledge or even the means of acquiring it.  The internet has profoundly altered that balance of knowledge.  Motivated “patients”, i.e., consumers, now frequently know more about their diseases than most of the doctors they encounter, much less the nurses or others of the doctor-lite crowd.  The doctor is no longer the sole, literate, non-religious man in the village.

We have granted the medical profession, and all the other allied “professions” and medical institutions, a monopoly over our medical care.  It has gone so far as to prevent us from taking medicines that we need without their permission.  That monopoly is no longer justified by the balance of knowledge — and hence, power — that now exists.

Prof. DiLorenzo points out the influence states have in inhibiting competition.  Again, using doctors as a conspicuous example:

Physicians have long enjoyed a degree of monopoly power derived from state legislatures that delegate to the American Medical Association (the doctors’ union) the “right” to limit entry into medical schools through accreditation. Only graduates of accredited (by the AMA) medical schools are licensed to practice medicine. [Not quite true.  Graduates from foreign schools can practice after passing a harder test than is required of AMA school graduates.]  The AMA has used these state-granted privileges to limit both the number of medical schools and the number of medical-school graduates. The reduced supply of doctors drives up the price of medical care and the income of AMA members.

The physicians produce an artificial shortage of doctors for the express purpose of providing full, highly paid employment for all physicians, even the most incompetent.  Implicitly, they are telling us — the people, the consumers — that their prosperity and job security are more important than our lives and health.  Like the military’s up-or-out policies — if you are passed over for promotion a certain number of times, then you are discharged — we need to graduate so many doctors that the incompetent cannot stay in practice.  And we need to demand the transparency of results — medical outcomes — identified by individual physician, to know which doctors are good and which are not.

The word “patient” indicates that, traditionally, we are to be passive, medically, in the care the doctor provides.  This is exactly what must change if we are to rectify the priorities of the health care system.

We must return to first principles, those upon which our republic was founded.  We must be clear in our use of words.  This is not a matter of Democrat/blue/left/progressive vs. Republican/red/right/conservative.  This has nothing to do with the political parties of the twentieth or twenty-first centuries or on which side of the hall the French factions congregated in the eighteenth.  These are all false, one-dimensional scales that mislead rather than enlighten.

This is a matter of liberty vs. tyranny.  Tyranny has its own eternal allure.  ” I am weak, I want someone to take care of me, make decisions for me.”  This motivates children, the weak and the slavish.  At the other end of the true scale is Liberty.  “I am strong, I can take care of myself and my loved ones, I will decide what is in my own best interests.”  These attitudes motivate the strong and the free.

In the true meaning of the term, Liberty is what we strive for.  The only progress that we can make is toward greater individual strength and enlightenment to support greater liberty.  Heading back from Liberty towards Tyranny is regression.  As usual, the terms have been stood on their heads in the current national health-care-reform debate:  a Liberal means one who wants the government to have a greater and more tyrannical role, and a Progressive is one who sees movement towards Tyranny as “progress.”  a Progressive is actually a Regressive, a Liberal, a wannabe Tyrant.

We must privatize the health care system, break up the monopolies, encourage competition, demand transparency of outcomes, and take back our power as free adults and as consumers.  We do have the power.  It is up to us to use it.

India is one indicator of the possibilities brought about by an abundance of doctors and freer access to medicine.