Archive for December, 2009

Prescribed drugs versus generic equivalents

2009-12-31

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

2009-12-22

Today I read an article in the Los Angeles Times about forcing people to pay for insurance coverage. See the following article: http://www.latimes.com/news/nation-and-world/la-na-healthcare-qa21-2009dec21,0,3694244.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.

One of Those Days

2009-12-19

Blogging down under.

Reunited with my Recliner

2009-12-18

Selch and I have relocated due to an employment opportunity for him.

Our temporary quarters are in an extended stay hotel room.  It had a rather uncomfortable armchair. Selch, being the ever-so-thoughtful great guy that he is, had my leather Lazboy recliner moved in. I usually remain in it 24/7, except for occasional outings to see my favorite doctor in Manhattan, a movie, or an occasional trip to a restaurant that serves gluten-free food.

Anyone who has to sit for long periods due to illness knows that a comfortable chair is necessary equipment for getting by day-to-day and night-to-night.

In addition, my view has been wonderfully enhanced by two playful dragons on a room-divider screen.  What is behind there is a cavern of clutter, as the “closet” area has no door.

Now, I am becoming settled in my new nest.

It makes me want to sing:    http://www.youtube.com/watch?v=glC9jt9k

Giving your symptoms names

2009-12-18

Any one with chronic pain or chronic illnesses knows that to get by it is best to maintain some sense of humor, no matter if anyone else “gets” it, you know what you mean, that is all that matters.

I saw this cute post today:

Have you named your illness symptoms? That may sound like an odd question, but there are some very good reasons for giving your symptoms names. One of them is this: when you give one of your symptoms a name, such as Gertrude or Elmer, you separate yourself from it. When you do that, you are much less likely to identify with it, which makes it possible to step back and see ways for dealing with it and managing its effects on your life that you otherwise couldn’t.

Here’s an example of what I mean: if you have a severe migraine, you may say to a friend or to yourself that you’ve been having awful migraine pain. But when you do this, you can easily feel like a victim. If instead, you tell your friend or yourself that “Sylvester” has been acting up and making himself felt, you don’t make it personal, so you are much less likely to feel like a victim.

A related benefit of naming your symptoms is that it allows you to communicate with them. You can write to them and tell them how they’ve affected your life, and you can tell them how you have felt, and continue to feel, with them. When you do that, you will probably find that you feel a sense of relief and even freedom.

You can also talk to and even have a conversation with “Sherlock” or “Agnes” (or whatever you’ve named your symptoms). When you do, besides telling them how you feel about them, you can ask them if there is anything they want you to know. You can ask them what are the things you do and the situations that make them worse and you can ask them what changes you can make to lessen their severity and minimize their impact on your life.

End of Post.

If people with multiple personality disorders can do it, we should be able to be as equally creative or more.   Illness may narrow your abilities to do certain things but it gives you an opportunity (when you are not trapped in a whirlwind of pain and unwanted thoughts) of time to reflect and open your mind to possibilities like when you were a child looking at the stars or the clouds.

I read recently that physicians are finding some people who have FTD while they lose their ability to process numbers etc. are becoming more creative and are more able to express  themselves artistically.  There are many ways to be artistic: painting, drawing, writing, collaging, making jewelry, etc.  I participate in something I call creative television watching.

I love to watch Turner Classic Movies.  Sometimes when I am watching a movie for the second, third, fourth time, I imagine what it would be like if they re-arranged the furniture, if the guy hadn’t gotten on the train, or if he had gotten on the wrong train or maybe the train didn’t show up at all.  After a good movie often I think about the movie and the characters, imagining what might have happened  after the end of the story, an entirely different story perhaps.

I think about possible future inventions and one gadget I would really like would be something that connects to your brain patterns and to my favorite movie so that I am able to take the characters and create additional scenes and plotlines.

You might think I have too much time, but my time like everyone else’s time is limited.  I just know that my curtain call for this life character is sooner than I use to believe.  I wonder when you  leave off stage does someone direct you to the right or the left or do you just stumble out into the audience?

Back to the naming illnesses.  I think I’ll give the name game a try.  My father use to call me Myrtlerayleenajane.  There’s a few names to start.

Regarding my posts

2009-12-11

I appreciate everyone who is stopping by to read my blogs.  I want everyone to know that opinions expressed are my own. I am not affiliated with any company or organization.

As I have explained I am an individual who has many illnesses including complex regional pain syndrome and FTD which is a terminal degenerative brain disease.  I spent years trying to find out what was wrong with me and I know that thousands of other people have the same experience.

I have decided in the time I have left to be a patient advocate for all people who are suffering chronic illnesses.  In this way, I am able to do something good with the blessings I have been given.  I am mostly confined to home and the only way I am able to help people is by blogging, posting, and writing.    I  advise people as always  to first get advice from their physicians before they try any treatment.

Thank you again

The Lady in Red High School Days

2009-12-08

The lady in red, High School Days

Visit with FTD Research Specialist

2009-12-04

Monday, at 8 a.m. sharp I arrived at the office of a physician who does research in FTD.  Selchietracker as always my faithful companion accompanied me.  The physician’s office is affiliated with a local medical school.  I had been to other clinics in this medical school for various reasons and not been satisfied with the physician’s diagnosis and/or treatment.

I was willing to give this physician a chance.  He had been recommended by a person at National Conference for FTD which Selchietracker attended a few months ago.

After we were escorted to his office and we met the doctor, the first thing I realized was that I had met him before.  I had worked in the local medical community for several years dealing with many physicians so I assume that I have met him somehow in that capacity.

Unfortunately, because we are in transition and about to move again, Selchietracker could not locate the disc which contained my MRI film at the last-minute when we were walking out the door.  He did bring documentation from a doctor who diagnosed me at Johns Hopkins as well as the results of the MRI and other tests as well as her conclusion and findings.

He asked us what we wanted from him, confirmation of diagnosis? Did we seek  treatment options-he quickly answered there was no treatment, or  he asked, did we need further information?

Selch explained that we would like to identify what strain of FTD I might have and find out further information about research trials, etc.

First the doctor bragged about  their extensive collection of autopsy slides for FTD patients.  Apparently they have the largest number of autopsy slides for FTD in the country.  Well that was okay but not very helpful to me since I am still the walking wounded.

Next, he put me through a battery of neuropsychiatric evaluations.  Any of you who have had to do these tests or watch your loved one with FTD complete these tests know that it is no fun to not remember simple words.  I especially fear the dreaded count back in 7’s from 100.  I can never get past the first few, major mental block.  Or the pictures you are required to draw of the connecting shapes and a three dimensional square.  My pathetic attempt looked like the work of a three-year old and to add insult to injury, he told me he was labeling my work with my name.  Come on, enough of kindergarten.

Then he did the usual neuro exam.  I know the drill well.  I could probably perform the exam blindfolded without the assistance of the doctor.  Of course, nothing wrong there except his breath.  I do wish doctors would check their breath before approaching a patient.  There is nothing like being poked and prodded and having to hold your nose.

After the exam, we discussed my history of symptoms.  He asked a few appropriate questions.  Then came the true test. What about my behavior?  Selch proudly proclaimed that despite my other symptoms commonly associated with FTD including apathy towards activities of daily living , that I was still a compassionate person who understood the affects of my illness.

Despite the fact that the physician had not reviewed my MRI and did have ample evidence from a doctor from Johns Hopkins who specializes in FTD that I did have FTD,  he proclaimed I did not have FTD because my behavior was not appropriate.

Because of my problems and reactions to nightmares, he conceded that I did probably have Lewy bodies.

For a brief description about Lewy bodies see: http://en.wikipedia.org/wiki/Lewy_body

For more information about Lewy bodies and FTD see:  http://ftdtheotherdementia.com/whatisftd.html

Selch explained to the doctor that there is a variant of FTD that has Lewy bodies.

The doctor stubbornly remarked that he had seen thousands of FTD patients (FTD is supposed to be still considered rare and it isn’t as if he is attached to a major FTD clinic, so did he mean thousands of live people or thousands of autopsy slides that he mentioned previously) and every single one of them male and female had a history of acting out and not understanding anything about their illness.

I told him that I could produce six people diagnosed with FTD who are able to attend a weekly chat and discuss their disease process.

He gave no response.

So, he wished us luck and suggested we send  him a copy of my MRI.  I think we will be heading to greener pastures.  We are moving closer to a well-known clinic for FTD patients so I think we will continue down the yellow brick road to meet Oz.

Because, because of the wonderful things a good physician does, like PET scans, etc.

I realize the best way to get a functional MRI,more complex scans  or trial treatment is to be enrolled in a study.  Am I willing to be a guinea pig?  I’ve been poked, prodded, scanned, panned, scoped, doped and have never lost hope since I was a small child.

I still firmly believe that there are many others like me that are out there but they haven’t been diagnosed.  Most neurologists don’t know much about FTD.  If depression and anxiety are the first features, then the patient is likely to do a lot of couch time.  I went to many doctors for many years before a doctor discovered that I had a complex regional pain syndrome, with a domino effect other diagnoses fell into line .

I was diagnosed with FTD because of Selch’s practice of smoothly prodding doctors to order tests needed to evaluate my condition.  Also, we have learned when presented with an abnormal lab result or other abnormal finding that cannot quickly be explained away, we will seek multiple consultations until we are satisfied with a diagnosis or have reached a temporary point where we have to stop until other doors open up in the future.

I love when we go to Manhattan to see one of my doctors.  While we are on the streets and Selch is rolling my wheelchair down the uneven sidewalks ,I always see someone with a poster that proclaims one thing or another.  I also think of those comedians who say, “Here’s Your Sign” and “You might be a redneck if…”.  I imagine rolling around holding a poster that says IF YOU HAVE THE FOLLOWING SYMPTOMS YOU MIGHT HAVE FTD SO GET HELP NOW WHILE YOU STILL HAVE A LIFE TO LIVE.

Instead I remain in my “sick” recliner, preaching to the choir.  Maybe, someday, somewhere, someone will find me.

Opioid Treatment and the Chronic Pain Patient

2009-12-04

Today I read the following post

Long-Term Opioid Therapy – What Are the Effects?

Most people who need to take opioids on a long-term basis for chronic non-cancer pain are understandably concerned about what kind of effect it will have on them.  Many have mistakenly believed that opioids destroy both the body and the brain – and possibly even shorten lives.  Although pain management experts have long contended that opioid therapy is not dangerous when properly administered, until now there has been no actual research on long-term opioid use (10 years or more) to back them up.

Enter Forest Tennant, MD, who undertook a first-of-its-kind research study evaluating chronic pain patients who had been receiving opioid therapy for 10 to 35 years.  The results of his study should be extremely encouraging for patients who need long-term opioid therapy as well as their doctors, some of whom may have been hesitant about it.  Tennant concluded that the significant improvements in quality of life and physical functioning from opioid therapy are so positive they outweigh any negative complications, which can be easily managed.

Research Methods

Tennant’s study looked at 16 female and 8 male chronic pain patients between 30 and 79 years of age.  Their chronic pain conditions were:

Neuropathies and Arthropathies – 29.2%
Spinal Degeneration – 25%
Abdominal Adhesions or nNeuropathies – 20.8%
Fibromyalgia – 12.5%
Headache – 8.3%
Hip Necrosis –4.2%

The subjects had all been receiving continuous opioid therapy for 10 to 35 years.  All were taking a long-acting form of morphine, oxycodone, fentanyl or methadone and one or more short-acting opioids for breakthrough pain or pain flares.  They all also took additional medications such as muscle relaxants, sleep aids, hormone replacements and dietary supplements.

Study Results

Almost all of the patients (22 of 24) said their pain had permanently decreased over time.  And the vast majority (20 of 24) felt their opioids still provided the same relief as when they started treatment.  All of the patients  reported one or more functions or activities they can do now that they couldn’t do prior to beginning opioid therapy (i.e., get out of bed everyday, take walks, shop or visit friends).

Several new medical conditions developed in the group over the 10+ year period, such as hormone abnormalities, weight gain, tooth decay, tachycardia, hypertension, osteoporosis, hyperlipidemia, and diabetes.  There was no clear way to determine whether these conditions were caused by the pain, the opioid therapy, the natural aging process, or were just inherent in the patients; however, all of the conditions could easily be medically managed.

All but one of the males in the study experienced lowered serum testosterone, a known complication of opioid therapy, which can be controlled by hormone replacement therapy.

Notably, there were no neurologic complications including dementia, hyperalgesia, tremor or seizures.  Nor were there any liver, kidney, or gastrointestinal complications, except for minor constipation.
Conclusions

Rather than causing serious health problems, Tennant suggests that because of the decrease in pain, opioids may actually allow or even promote neurologic healing.  He goes on to suppose that opioid therapy may prevent a number of medical complications of pain and also may prevent early death due to the over-stimulation of the pituitary-adrenal-axis or possibly electrical stimulation produced by damaged nerves.  Tennant acknowledges that this is a small study and states that much additional study is needed to determine cause and effect of medical conditions in opioid-maintained patients.

Finally, Tennant concludes, “Even though the number of patients evaluated here is relatively small, the great improvement in their quality of life and physical functioning is so positive and the complications of the therapy so easily managed that long-term opioid therapy should continue to be provided and evaluated.”  End of article


I wish this information was more readily available to patients who are considering pursuing opiate treatment for their pain as well as to provide correct information about narcotics to the general public.  Physicians are using many different types of medications to treat chronic pain disorders and some of them have shown promise in treating chronic pain.  What many people don’t realize is that many of these other medications have more side effects and medication interactions than narcotics.

Opiates are still a main stay of treatment for chronic pain patients and there are good reasons for this.  Although opiates have become a totum of evil due to a  massive media push claiming that opiates  by their very existence have caused a rise in prescription drug abuse.  Opiates of themselves are not evil and it is more of a reflection of the culture, change in family dynamics etc. that are the cause for a “rise” in drug abuse involving prescription narcotics.  This phenoma is not because of sudden lax rules in prescribing narcotics by physicians or not the fact that narcotic prescriptions are on the rise.

When I think about when I was growing up in the 70’s, doctors were more lax about prescribing narcotics then and narcotics were available.  There is a rise of availability of narcotics strictly due to their illegal status because the illegal drug business is profitable.  Perhaps because of the constant portrayal of street drugs as “evil” more people have taken to “abusing” prescription pain medication because it seems more socially acceptable and the product received in deemed to be safer.  Narcotics are not harmful to patients who take them as prescribed under a doctor’s supervision. There has been no study that proves that long-term narcotic use is harmful to the patient’s internal organs.  Studies actually show more damage to patient organs from continuation of chronic pain.  New studies involving chronic pain show that it is different from acute pain and the result of continuing chronic pain can have a devastating effect on the mental and physical well-being of a person.

The truth is that thousands of people suffer from chronic pain and bad media press, increased governmental regulation and shift of  the War on Drugs to prescription medication  has made it more difficult for patients who suffer from chronic pain to receive the treatment they need to deal with their illness.

Insulin is not with held from diabetics and so in the same way opiates should not be with held from patients who suffer from chronic pain.

Because narcotics have received such a bad rap, it is hard for people who do not have chronic pain or are an advocate for a loved one or person that has chronic pain to understand that receiving narcotics under a doctor’s supervision does not equal drug abuse.  Any person who has chronic pain and takes narcotics will eventually become physically dependent on the medication.  It may surprise people to know that many other drugs cause dependency such as anti depressants.  That is why doctors are careful to wean their patients off of anti depressants.  If you do not believe that withdrawal occurs for these patients, then talk to a few people who have been on a certain antidepressant for a long time and went off of the medication cold turkey.

Drug dependency does not equal addiction.  Addiction requires a psychological craving for the drug and most people who take opioids as prescribed do not develop a psychological dependence.  Many doctors have confused a patient’s request for a higher level of pain medication as drug seeking behavior when it is actually a sign that the patient’s pain is not under control.

The War On Drugs for all its good intentions has not reduced the amount of illegal drug traffic.  It has created many jobs for people in law enforcement, courts and the prison system.  But, the government still has the same problem that they had when they tried to prohibit alcohol.  People want to be able to use these substances as they do alcohol and nothing the government can do will decrease that desire. I am not saying that making all drug use legal will solve all problems regarding drug abuse.  I do not know if that would be possible in our society.  By criminalizing drug use  criminal industries will naturally look to drugs as a way to obtain profit just as they did when there was a prohibition on alcohol.

For the War on Drugs to work, people would have to change their minds about the way they feel about their personal right to use what substances they desire in their daily life.  The media wants everyone to believe that if the government did not “control” drug use that there would be a massive apocalyptic  like wave of drugged out zombies who would destroy everything near and dear to the law-abiding citizen’s heart.  The problem with this is that there just isn’t any proof that this would be so.

I’ve seen recent so called documentaries about the plight of opium addicted women and children flooding the plains of the U.S. as pioneers progressed towards unclaimed country in the 19th and early 20th century.  Yes people did become physically addicted to opium and cocaine.  Also, snake oil salesmen sold products to people that could harm or even kill them.  It was the original intent of the FDA to protect people from falling prey to these snake oil salesmen. The truth is when almost anyone who likes to do genealogy  searches for information about ancestors such as Great Uncle Grover or Great Grandmother Pearl, they usually find brief accounts of  people struggling to survive on the farm or ranch mixed with amusing anecdotes.  Rarely, does anyone find personal accounts recalling tales of long-suffering drug addiction and family interventions among the common folks.

Those heart breaking accounts of families being torn apart by drug abuse and painful intervention are recent occurrences are certainly real ,but they  have been mined by the media to feed the habit of the general population for reality based television.

I’m not saying that substance abuse isn’t a problem.  I am saying that things shouldn’t have gotten  to the point that the government has become so involved the Drug War that regulations and red tape are surrounding chronic pain patients and their doctors, causing doctors to practice defensive medicine and keep many chronic pain patients from having a decent quality of life.

How has it happened that there is much more government interference in the way that physicians practice medicine in regard to prescribing narcotics?  The DEA, not having much success in winning the War on Drugs, in my opinion  has switched to softer targets.  Because when it comes down to it in any law enforcement situation be it convictions by the district attorney or tickets written by the police, numbers count.  High numbers of convictions or in the case of the DEA, documentation that they are making a difference in decreasing the business of “illegal drug use”  means success and more funding.

The following is a policy statement issued by the DEA regarding the wonderful ways they are changing regulations to protect against drug abuse of prescription pain medications and how their new regulations actually make it easier for the doctor to prescribe schedule II narcotics to the patient.  Also, they mention according to their statistics they really haven’t reprimanded very many doctors and so their impact of pursuing doctor’s in their medical practices is small.  It is explained at the following site http://www.justice.gov/dea/speeches/s090606.html.

Many physicians and advisors in the health care industry are concerned these acts by the DEA may only be window dressing in light of  tougher regulations  proposed by the FDA.

The real story is that new FDA regulations include the possibility of requiring doctors and allied health personnel to take special training classes for each scheduled narcotic  they provide that is on the government’s list.  See http://updates.pain-topics.org/2009/10/dea-opioid-rems-intimidating-future.html regarding the possible future and scope of this training.   News about further requirements from the FDA on this matter are supposed to be published today, December 4, 2009.  I have also read in various blogs that the DEA has a future proposal in which they would take the list of patients who receive schedule II narcotics and ration the amount of medication that they may receive.  The very thought horrifies me.

Now I will talk about doctors doing “business as usual” with the DEA.  The DEA since the 90’s has taken the bold step of raiding doctor’s offices where they suspect illegal drug trafficking. There were some actual “pill mills” but those were disposed of quickly and easily. It is true that the DEA has not raided “many” physician’s offices but they took pains to raid doctor’s offices in a way to make an example to other physicians.  They first selected small and rural physician practices in which physicians prescribed “a more than average” amount of pain medications.  I am not just talking about time released scheduled narcotics but narcotics such as Lortab and Percocet as well.

A family practice doctor in a rural community may look like he or she is prescribing “more” narcotics but actually he or she is seeing the same patients more often over a life time so if the doctor had several elderly patients with chronic pain conditions, it would appear he or she was prescribing more narcotics than the average physician.

The tactics of the DEA actually would appear silly in their draconian nature if the results of their actions were not so sad.  They have targeted certain physician practices as described above.  They are already provided with lists of patients who have narcotic prescriptions filled, as well as what pharmacy the prescriptions were filled,  by what physician and when the prescriptions were filled.  With this information, they were able to do routine background checks on patients as well as find patterns of any patient who had narcotics filled at different pharmacies, by different doctors within a certain period of time.

Any patients of the doctor’s practice that the feds intended to review who  had a history of drug related violations or had patterns indicating “doctor shopping” for narcotics were contacted by the feds.  The feds threatened prosecution of various drug offenses and offered “deals” to these patients if they would “rat” on their physicians.  Ratting met anything from simple statements that the doctors provided them a prescription for narcotics to confessions that the doctor had actually known about their drug history and “drug shopping” activities an chose to ignore it when giving them a narcotic prescription.

A doctor can be very prudent in his practice and still not know about a patient’s drug history, recreational drug abuse or “doctor shopping” involving other doctors because they only know what patients are willing to tell them.  Most doctors if they suspect a history of drug abuse or “doctor shopping” will take appropriate measures in dealing with these type of patient.  There is no reason to think that any prudent businessman wouldn’t do so and especially doctors who have taken an oath to practice medicine.   Yes, the primary focus of many doctors has leaned towards  financial advancement.  With Medicare fraud, regulations by insurance companies and new Joint Commission requirements, doctors are not going to risk their practice by prescribing narcotics to people who they know would abuse them.

After the DEA obtained information about certain patients and “confessions”, they would approce the doctors with the evidence and ask them if they would prefer to settle out of court or face a public jury trial.

Most doctor’s settled out of court and were given reprimands.  Those brave courageous doctors who chose to fight the good fight and bring their case to court found themselves confronted with over eager district attorneys who were willing to prosecute to the fullest extent of the law and beyond.  Most of these doctors lost their medical practices and their licenses.  Many chronic pain patients who lived in small communities were stranded without a way to obtain more pain medication.  Other doctors in the area were certainly not going to run the risk of their fellow fallen physician.

Word soon spread to other physicians across the country.  This caused a wide spread panic among physicians.  Some general practitioners and even pain specialists decided to get out of the business of prescribing opioids.  Other pain management doctors consulted their lawyers and started enforcing strict guidelines for their patients to follow if the patient wanted to continue opioid treatment.  The first things to arrive were physician patient pain contracts.  Patients had to sign lengthy documents in which they promised to be willing to undergo random drug testing, not to engage in any recreational drug use, to inform the doctor if they received any pain medications by any other physicians.  Any means all pain medicines down to a lortab given to you by your dentist after a dental procedure.

These rules were up to interpretations by the doctor.  Some doctors did as a paper exercise but some doctors used the pain contract to engage on some kind of power trip.  I don’t know if they were seduced by power or extremely paranoid but I have read multiple cases of patients being discharged because they did not inform the physician before they took a pain pill prescribed to them by their dentists and when they mentioned it off handedly to the nurse during the next appointment, they were discharged from the doctor’s care.  Once, I waited four hours in the doctor’s waiting room for a urine drug screen test.  The receptionist kept telling me to be a good patient and sit down.  Finally, I was discovered by a nurse as they were locking up for the day.

If a patient is discharged by a pain management physician for any reason, it is definitely a black mark on their record and it makes it more difficult for a patient to find another pain management physicians because the pm doctors do not want to take on the liability of someone who has been discharged from care.

New regulations to be enforced by the DEA  and FDA provide more red tape to gag the physician from providing proper opiate treatment to their chronic pain patients.  For information regarding requirements regarding classes that physicians must take see the following http://www.dhss.mo.gov/BNDD/BNDDnewsletter.pdf.

Should Physicians tell Patients about Medical Mistakes?

2009-12-04

Today I read an article in Medscape regarding the issue of whether or not a physician should tell their patients if they make a mistake in the medical care of the patient.  You can read the article here.

I have suffered greatly because of physicians’ medical errors.

The first time, was in 1991. I had a D&C for a miscarriage.  After the procedure I continued to have bleeding and began to develop severe abdominal pain.  I informed my physician and the office said to make a follow up appointment.  I had the D&C where I lived and it was far away from my work place, so a secretary at my office got me in to see her doctor at the medical school clinic.  Over a course of three weeks, I saw five physicians.  None of them could figure out what was wrong with me. One of the doctors, did a pregnancy test.  She asked me if my stools were dark and I told her they were.  My pregnancy test was still highly positive.  She brought up the possibility of a tubal pregnancy but after consulting with the head of surgery she told me that wasn’t a possibility.

My last clinic appointment was with the head of surgery.  He examined me and reviewed my case and concluded that I was a post-partum neurotic.  He gave me a Demerol shot and advised me to go home.  Fortunately, a urologist I had seen was there and he said he thought something was wrong with me.  He said he was going to admit me to the hospital and he sent me down to GYN for a sonogram.

After they performed the sono, the doctor pulled out a huge, long needle.  I asked what they were going to do.  I was informed that they saw pus on my sono so they were going to extract it via my vaginal canal.

After they began the procedure, the physician turned towards the intern and told him to page the surgeon stat for emergency surgery.  He told me I had massive bleeding in my abdominal cavity.

They rushed me into emergency surgery.  I remember the doctors running down the halls pushing my gurney to the OR, all in slow motion.  A nurse told me I might not survive.  Fortunately, a top specialist in fallopian tube repair was on call.  I had a ruptured tubal pregnancy, not post-partum neurosis.  The specialist successfully repaired the tube.

After surgery, the urologist came in to apologize to me.  He told me that I had a tubal pregnancy.  All the doctors assumed because I had a D&C that I couldn’t have a tubal pregnancy.  The surgeon who repaired my tube had been a professor of the doctor who did my D&C.  He called the doctor and asked him the results of the D&C pathology report.  It showed no fetal cells.  Physicians are routinely supposed to read pathology reports after surgery, but the physician said it had been misfiled.  The doctor who repaired my fallopian tube told my original physician to call me immediately and apologize to me, which he did.

Fortunately, everything turned out okay.  I had a baby boy two years later.  Obviously this happened because of slightly unusual circumstances, tubal pregnancy, but there was gross physician error involved.

Did I feel better that the physician apologized.  Yes I did.  I still was angry that none of the other physicians, especially the head of surgery, did not come to see me after surgery and apologize.  Did I consider suing?  It crossed my mind but since I was in the medical profession I knew that there was no case because there was no loss of organs.

The second incident occurred in 1997.  I was having right sided abdominal pain.  I consulted a GYN and she told she would do surgery to remove abdominal adhesions.  She did a laprascopy but found massive adhesions. Without informing me or my husband or obtaining a surgical consult, she converted the surgery to a laparotomy. When she was trying to remove adhesions, she accidentally injured three nerves in my abdominal area.

After surgery I had trouble walking and severe abdominal pain.  She told me both symptoms would pass and sent me home.  For two weeks I difficulty walking and severe pain.  I saw her for a follow up visit.  She told me the surgery went well and that she thought I had a psychosomatic disorder that caused my pain.  She explained to me stress can do things to the body and put me on antidepressants.

I tried to see her again but she refused to see me.

I suffered with this pain for years and over the years it got much worse.  No one could figure out what was wrong with me.  I ended up seeing a pain management doctor for treatment of my symptoms.

In 2003, we moved and I saw a pain specialist who was a neurologist. He did some testing and told me I had reflex sympathetic dystrophy which is a chronic pain syndrome. He said after reviewing my records, my disorder had likely developed after a complication in the abdominal adhesion surgery.  I obtained my medical records. We discovered what she had done. Did I file a lawsuit? It was too late to pursue any legal recourse.  Was I upset?  Tremendously so.  It has affected my whole life.  I am tortured every day by severe pain.

Do I think that physicians should tell patients when they made an error in their treatment?  Of course. When you as a customer pay for services you expect to be informed if any errors occurred in the performance of your service.  What do you do when your accountant makes an error in your tax return, your mechanic doesn’t fix your car as he or see promised, or an appliance you were sold doesn’t work?  You complain to the appropriate people and expect an apology and an assurance that the problem with be fixed if possible.  If the service provider is unable to fix the problem, you expect some compensation.

So why do so many physicians not tell their patient about medical mistakes?  I think because as medical students, physicians come to understand that telling patients about your mistakes just isn’t the thing that doctors should do.  They should be seen by their patients as a person with superior knowledge in the medical field so the patient will be able to trust them.   Also, their medical malpractice insurance is ridiculously high and they are afraid that they will be taken to the cleaners in court.

First of all, almost all medical malpractice claims are settled out of court.  I have done quality peer review of patient cases with physicians.  Most people who find out that a medical mistake in their care end up not suing.  They may threaten to sue but often change their mind when they find out how difficult the process to recover any damages may be.

The attitude of the physician as the great healer, keeper of medical knowledge, and the condescending “protective” relationship of the doctor to the patient should have been thrown out years ago.  Today’s medical consumer is much more likely to want to know what is going on with their care and they also have more tools to research their illness via the Internet.  Doctors say that medical information on the Internet is incomplete and full of errors.  That is true, but a large part of the population of people are educated, especially the baby boomer generation.  They are use to obtaining and receiving information where and when they want it.  And half of the doctors look up medical information on Wikipedia!

So, as the baby boomers mature into their elder years, I believe the consumer movement in health care will explode with thousands of people seeking information about their medical histories and care.  It will probably change the practice of medicine.

I think the role of the doctor today should be that of patient advocate.  The doctor should be a team member in providing good medical care for the patient. He or she should encourage their patients to become informed and welcome their efforts to find out information regarding their condition.  If the doctor is able to communicate with the patient about their knowledge and continues to encourage good communication between the patient and the doctor, it is reasonable to assume that misunderstandings that lead to threats of lawsuits will decrease tremendously.

Many physicians say that they will not tell their patient about any mistakes they may have made in their patients medical care.  Consumer trends and new governmental reform may force them to reveal more information. They should get used to providing information to their patients.