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Physicians, pharmacists and pharmaceutical companies complain bitterly that patients don't take their medicine. Health professionals wring their hands and gnash their teeth over what they call the compliance crisis. Actually, they have changed the name because of a recognition that this term sounds a little condescending. They now refer to it as the adherence problem. It still has a certain amount of finger wagging attached because patients are not following doctors' orders.
What it boils down to is that a lot of patients either do not fill their prescriptions in the first place or they stop refilling them and cease taking their medicine. A great deal of attention has been devoted to trying to "improve patient adherence." Prescribers sincerely believe that if they could just get people to swallow their pills as directed there would be fewer medical misadventures. The National Council on Patient Information and Education summarized it this way:
"Lack of medication adherence is America's other drug problem and leads to unnecessary disease progression, disease complications, reduced functional abilities, a lower quality of life, and even death."
What has been missing from this decades-long debate is the question why don't patients take their pills? Most people do not want to suffer or end up in an early grave. Health care professionals and drug companies have seemingly ignored their own responsibility in this discussion. One of the major reasons people are reluctant to swallow prescribed drugs is a lack of trust.
SIDE EFFECTS • SIDE EFFECTS • SIDE EFFECTS!
Not uncommonly health care professionals try to put a positive spin on the drugs they tell patients to take. Prescribers may not mention some of the most common or worrisome complications for fear they might discourage a patient from taking what is perceived as needed medicine. But pretending a medication doesn't cause side effects doesn't make it so. When people feel bad because of their medicine, they frequently let their doctors know or they just stop the medicine. If the doctor denies that the medicine is responsible it sets up a conflict and leads to distrust.
At the bottom of this blog we have shared stories from visitors to this website about the frustration people feel when their complaints are disregarded or dismissed. But there is another far more significant reason for the lack of trust. It has to do with the dark side of medicine. It is a secret that patients have figured out on their own. Physicians and pharmacists rarely know about the long-term negative consequences of the medicines they prescribe and dispense. That's because the FDA rarely requires such prolonged testing. As a result, we have learned some devastating lessons over the decades and people realize that there have been far too many unpleasant surprises like those described below.
THE LONG-TERM UNEXPECTED COMPLICATIONS OF MEDICATIONS
• Hormone Replacement Therapy (HRT)
Premarin (conjugated estrogens) has been prescribed since the early 1940s. For years it was one of the best selling drugs in America. Tens of millions of women have taken Premarin, Prempro (estrogen and progestin) or some other hormone replacement therapy over the last 60 years. These drugs were prescribed for a variety of menopausal symptoms. Hormone enthusiasts also touted them to relieve anxiety, slow the aging process, build stronger bones and reduce the risk of heart attacks.
It wasn't until 2002 that the Women's Health Initiative (WHI) study revealed that HRT was likely to increase the risk of heart attacks, strokes and cancer. In 2012 data analyzed from the Nurses Health Study involving 60,000 women were reported. Those women who took both estrogen and progestin for over 10 years had an 88 percent greater likelihood of being diagnosed with breast cancer. Is it any wonder that women would feel angry and betrayed that it took more than 60 years for doctors to discover such serious complications from medicine that was prescribed so routinely to so many?
• Tranquilizers/anti-anxiety agents/sleeping pills
Another perennial pharmaceutical best seller is diazepam (Valium). It was first marketed in 1963 and went on to become the number one most prescribed drug in America. Like its chemical cousin Librium (chlordiazepoxide), which was introduced in 1960, Valium belongs to a class of drugs called benzodiazepines (benzos for short). These anti-anxiety agents, (also called anxiolytics, minor tranquilizers and hypnotics) were prescribed to tens of millions of people to take the edge off the stresses of daily living, calm jittery nerves and relieve insomnia. The success of Librium and Valium has led to other such drugs including Ativan (lorazepam), Dalmane (flurazepam), Klonopin (clonazepam), Halcion (triazolam), Restoril (temezepam), Serax (oxazepam) and Xanax (alprazolam).
What doctors did not tell patients, however, was that stopping such drugs could lead to unpleasant withdrawal symptoms. When patients complained that discontinuing a benzo led to anxiety, irritability, panic, insomnia, muscle twitches, sweating and depression, they were often told this was just their underlying anxiety coming back. Go back on the Xanax or Valium and don't worry about it. Of course we now know that withdrawal is a common feature of benzos and there are no clear guidelines about how to phase off such drugs gradually. Even more worrisome is a recent report from France suggesting that long-term exposure to benzos may increase the risk for dementia. It has taken more than 40 years to learn about this potentially devastating consequence. Again, is it any wonder Americans are distrustful about long-term complications of medications?
• Arthritis drugs/pain relievers
Patients with arthritis have a lot of reasons to be distrustful. In the 1950s they were told that there was a miracle medicine called cortisone that would ease their aching joints almost like magic. What they weren't told till yeas later was that long-term use of corticosteroids like cortisone, dexamethasone, prednisolone and prednisone could lead to cataracts, glaucoma, high blood pressure, stomach ulcers, blood clots, osteoporosis, muscle weakness and diabetes.
When nonsteroidal anti-inflammatory drugs (NSAIDs) were introduced in the mid sixties they were perceived as much safer than "steroids" like prednisone. Indocin (indomethacin) was followed by drugs like Clinoril (sulindac), Feldene (piroxicam), Motrin (ibuprofen), Naprosyn (naproxen) and Voltaren (diclofenac). Each of these prescription medications was hugely popular until the next NSAID was marketed. Although doctors warned patients about the possibility of stomach upset or ulcers, they frequently presented these medications as quite safe. The FDA agreed and approved ibuprofen for over-the-counter sale in 1984 as Advil and naproxen as Aleve a decade later. It wasn't until the Vioxx scandal in 2004 that people began to realize that NSAIDs might also cause heart attacks and strokes.
Vioxx (rofecoxib) was approved in 1999 with much fanfare. It was supposed to ease pain and inflammation without the stomach upset associated with other NSAIDs. By the time it was pulled from the market, tens of millions of people had taken the drug worldwide. No one knows how many people suffered heart attacks as a result of taking Vioxx, but the experts have estimated that tens of thousands were harmed.
A recent study from Denmark suggests that virtually all NSAIDs including Celebrex (celecoxib), ibuprofen and diclofenac (Cataflam, Voltaren) can increase the risk for heart attacks in patients who have already had one such cardiac event. Other studies have suggested that even people who have not had a heart attack may be vulnerable to cardiovascular complications including an irregular heart rhythm called atrial fibrillation (A-fib). No one knows how many people may have suffered a heart attack or a stroke because of an NSAID-type drug. Is it any wonder that patients might not want to take their prescribed pain reliever for weeks, months or years, even though their knees, hips and elbows are hurting?
• Other drug disasters
By now you are probably getting the picture. The diabetes drug Avandia was supposed to protect people from heart attacks. Instead it caused them. Over the last several decades there have been a number of diabetes drugs (Rezulin, for example) that have been removed from pharmacy shelves because of unexpected complications. Actos is still on the market in the U.S. but it has been banned in France and Germany because of a link to bladder cancer. No wonder people worry about the long-term effects of their medications.
After tens of millions of people were put on statin-type cholesterol-lowering drugs, we learned that these medications could increase the risk for diabetes and cataracts. It took decades for these and other serious side effects to be acknowledged. We could mention sexual dysfunction from antidepressants along with the unpleasant withdrawal symptoms such drugs can trigger if stopped suddenly. But by now you are doubtless either bored or convinced that doctors often do not know about the long-term complications of the medicines they prescribe.
Poor adherence may have a lot less to do with uncooperative, lazy, unmotivated patients and a lot more to do with distrust of drugs. Physicians are going to have to demand better data from drug companies and the FDA if they plan to convince patients that the medicines which are supposed to be helping are not going to cause unexpected harm down the road.
STORIES FROM PATIENTS:
"I wanted to share with you my sister's experience with Lipitor. She is 81. Some time ago her doctor prescribed Lipitor for cholestoral control. Soon after, it seems, she began to lose her balance and fell several times, eventually breaking her ankle. She is now confined exclusively to a wheelchair. The closeness of her initial taking Lipitor and her consequent loss of walking is worrisome."
"ZOLOFT! Never believe anyone who says this drug is NOT addicting. I have been on this drug for 9 years. I have experienced a sexual side effect, little to no sex drive, since first going on this medication. I decided to quit taking it, being told again, it was not addicting. That fact, in my opinion, is false.
"Zoloft may not be addicting like a narcotic, but it IS addicting. After one day of not taking this drug I experienced a dizziness unlike any ever in my life. I felt as though my head weighed 100 pounds and made the muscles in my neck strain to hold it on. I could not walk across a room without holding onto a piece of furniture for stability. My blood pressure shot up to 190/105 and my pulse rate was 165. I was clammy, cold, and incoherent. My daughter, who works in the medical field, came to my house after a frantic call from me requesting medical attention. She took my blood pressure, pulse, and rushed me to the nearest ER. At the ER I was treated for a silent heart attack as those were the symptoms shown. After all seven hours in the ER, all tests returned unfounded. They could not find anything wrong with me. The following morning I woke with a pounding headache. My heart rate was still higher than normal and I was still very dizzy. By day three I felt total despair. I was continually light-headed with a pounding headache. I stayed in bed the following day due to the fact that I could not bear the pain in my head or the dizziness. On the sixth day my daughter called me and asked if I had stopped taking my Zoloft? I told her yes, it had been 6 days. She demanded I take it immediately and call my doctor in the morning. She told me she was sure my illness was a direct effect of not taking the Zoloft. I was going through a physical withdrawal.
"I did take the Zoloft 100 mg, and by morning, most of the symptoms were gone. By day two I was back to my self. All symptoms were gone. I get angry every time someone states Zoloft is NOT addictive. YES IT IS! Please read everything you can before ever stating this drug. It does work wonders for depression and panic attacks. But unless you are willing to take this drug for the rest of your life, do not start taking it."
"Seroquel left me vegetative for a short time. I was not warned about the bizarre side effects. I can't remember much of what happened, obviously!
Why don't doctors take their patients' concerns seriously? Why do you suppose so many of us go to the health food store for supplements instead of to the doctor?"
"I was given erythromycin for an infection and immediately started have heart palpitations and shortness of breath. My doctor didn't believe that it could be that drug, so he gave me something generic but still in the same family as erythromycin. I had the same reaction.
"A couple of years ago I found something on the AMA website stating that erythromycin had been responsible for several cardiac deaths!"
"I have for a long time thought that the medications I am currently taking was making my joints ache. I take metoprolol and lisinopril-hctz. I have been told that my coughing is a medicine cough but my physician has done nothing about it. She told me the medicine she has prescribed for me is doing a good job keeping my blood pressure down and she will not change it. She says, 'Don't mess with a good thing'.
"In the meantime, I am aching all over, can barely get around from pain in every joint, but when I complain she just ignores me and says it is arthritis. Then I read that the lisinopril might be causing my hacking cough and the metoprolol could be the reason that I ache so much. I will have a serious talk with my current physician next week or switch doctors.
"I want to get back to my old self again. Doctors aren't gods even though they think they are. I used to be very active and now I am like an invalid in my own world."
PEOPLE'S PHARMACY CAUTION: Although beta blockers like atenolol, metoprolol and propranolol have been linked to arthritis pain in some people, such drugs CANNOT be stopped suddenly. A withdrawal effect may precipitate chest pain or even a heart attack. Please do discuss this with your physician. If your doctor prescribed metoprolol for high blood pressure, there may be other options. And there certainly are other ways to control hypertension besides lisinopril. This ACE inhibitor can cause an intractable cough and the only way to solve this problem is to change to another kind of blood pressure medication with your doctor's supervision. You should not have to be an invalid in your own home.
"My 81 year old father is fighting for his life after being on amiodarone for 3 weeks. He has been in the ICU for 6 weeks with pulmonary fibrosis. The doctors keep calling it idiopathic fibrosis because they do not want to admit amiodarone caused this illness.
"He was healthy, active, had never been on medication before. His cardiologist gave him no alternate choice, sent him home with a bottle of pills, and never shared the warnings of side effects. What benefit do they receive from not blaming this medicine? If he had not taken it, he would be playing golf today."
Share your story below in the comment section of this blog. Let us know your thoughts about the "adherence crisis" in America. We would like to share your thoughts with health professionals who believe that if they just come up with the right strategy they can get people to take their pills on time and renew their prescriptions every month like clock work.
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