Tuesday, December 16, 2014

A Question for Doctors: Are Sick Patients More Important Than Healthy Patients Who Are Trying to Stay Healthy?


Now that I am in my late 60s I often worry that I am losing it. Incidents involving misplaced keys or forgotten grocery items take on an enhanced importance. But when I tell myself to step back from the panicky emotion and look at the present situation in a larger context, I can recall that I used to make the same mistakes in my 20s and 30s. It’s not so much actually losing it but anxiety about losing it that is at work here.

For doctors and medical administrators, anxiety about what might happen can cause temporary blindness to what is actually happening. In my conversation with the Medicare doctor it was clear that he was extremely concerned about harm that might come to women when estrogens were prescribed inappropriately by their doctors. For example, the WHI 2002 study did show that older women with existing heart disease should not be initiating hormone replacement therapy. In order to protect those who should not be taking estrogens, Medicare has erected a series of hurdles that must be negotiated each year by all patients wanting to take these medications (and their nurses and doctors). This situation means that many women who could avoid menopause symptoms (and possibly be helped by beneficial side effects) are excluded from taking a drug that could improve their quality of life and might actually extend their lives (depending on what current and future research shows).

The same reasoning seems to be at work in our current version of preventive medicine, which applies treatments and test to millions of healthy people so that a few can avoid illness. Jeff Wheelwright discusses this situation in an article entitled, Risky medicine: Misunderstanding risk factors has led to massive overtreatment of diseases people don’t have and probably never will.” If 100 people are treated with statins for 10 years only 4 will be saved from having a heart attack. For every 1000 women regularly screened with mammograms over the age of 50 one life is saved. Often overlooked is the fact that these interventions harm a certain number of healthy people.

The medical community needs to take a step back and ask itself questions like these:

- Is it more important to protect the sick or to maintain the healthy?

- How many healthy people are we willing to put at risk in order to spare one person
     from disease or death?

- How many healthy people are actually being harmed by any given intervention?

- To what extent can we accommodate the needs of both groups?

- How much is all of this costing?

Doctors dedicate their lives to helping patients. From med school onward they learn to interact and empathize with those who are suffering from illness. In the larger world, however, most of us, most of the time, are healthy. If that were not the case, no health care system could ever take care of all of us.When medical policy decisions are made,­ healthy people who are trying to stay healthy need to become part of the calculation.

What Happened Next

Continuing... 

Like many people who live far outside the Beltway, I tend to think of Medicare as an undifferentiated part of a faceless federal bureaucracy. After writing the letter, I kept it around for a couple of days, then sent it off to Marilyn Tavenner’s e-mail address on Thursday, December 11, in mid-afternoon.

That evening I received a call from Humana saying that my request for Premarin had been approved for one more year. This year my doctor’s nurse had requested the drug for me twice and been turned down twice. After that, I had had to file a grievance; my doctor and I each wrote a letter to Humana. One of those last two attempts had succeeded. This sequence of events is pretty typical of our experience in the three years we have been doing this.

In response to my e-mail to Medicare, I expected to receive a form letter or, at most, an e-mail from the PA of a PA well down in the food chain. I was therefore quite startled to find a message, sent the following morning, from a doctor at Medicare saying that someone would be in touch with me. If I wanted to speak to him directly, he said, I should e-mail my phone number. I wrote back and told him that, since I had received the approval from Humana, the immediate situation was resolved but that I was frustrated at having to go through this process each year and concerned that, at some point, I might not be able to get this medication at all. I included my telephone number but said that I didn’t necessarily need to talk with him.

Minutes after that message went off, the phone rang. It was the same Medicare doctor. Not expecting an important call, I had been playing a brain game on the computer. I had to scramble for a few seconds to get rid of my headphones so I could focus on what he was saying. Our conversation was quite friendly, although we were approaching the issue from different vantage points. His primary concern was to reassure me that I would always be able to get Premarin, although it didn’t sound as though the appeals process would be going away anytime soon.

When I asked why there were so many obstacles for women wanting to use this medication, he said that Medicare wants to be sure that doctors and patients understand the risks involved; some doctors prescribe estrogens for patients who really should not take them. I said that some doctors refuse to prescribe these drugs, even for women would benefit from using them. After WHI 2002, many women were persuaded to stop hormone therapy. (One woman I know had terrible problems with insomnia; another is now taking a bisphosphonate for bone density, which poses its own risks.) We agreed that it would be better if there were some way of providing easier access for women who can and are willing to take estrogens, while discouraging those for whom it is truly a risky drug. He thought that electronic records might make it easier to do this.

At the end of our conversation I had the sense that the Medicare doctor had really heard what I was saying and would continue to think about it. Whether any actual changes will come about is, of course, another story.

Monday, December 15, 2014

"Humana, I Still Want My Premarin – So I Wrote to Medicare"

December 11, 2014

Marilyn Tavenner, Administrator
Centers for Medicare and Medicaid Services
7500 Security Boulevard
Baltimore, Maryland 21244

Re: Problems Getting Medication

Dear Ms. Tavenner:

Recent advances in the field of medical genomics demonstrate the wide variations from one person to another and point to the need for a more individualized approach to health care. In spite of these developments, the advice issued by Medicare to insurance companies continues to rely on large studies that make generalized recommendations for diverse groups of individuals. I am a 68-year-old woman with no heart disease, cancer, or diabetes; I do powerlifting, cardio, and P90X workouts. Yet according to Medicare’s current approach, the recommendations for me would be the same as those for a woman my age with heart disease and diabetes.

This one-size-fits-all approach comes back to haunt me each year when I have to ask Humana, the provider of my medications, to make an exception and allow me to take Premarin, a drug that I have been taking for 35 years since I had a complete hysterectomy at the age of 32. Apparently Medicare tells Humana that Premarin is a high risk medication that should not be given to patients 65 and older. Will Medicare and Humana compensate me if I go off Premarin and get osteoporosis, hot flashes, and other symptoms of menopause? Of course not.

Medicare’s recommendation is evidently based on WHI 2002, a study that did not deal with estrogen-only therapy, was poorly presented to the public, and whose results have been called into question by subsequent research. I have written about this in my blog post, "When Emotion Trumps Science: the Latest on Hormone Therapy," http://bit.ly/18RqHfB. To give just one example, a Danish study reported in the British Medical Journal 10/09/2012 reached this conclusion after observing 1006 women:

After 10 years of randomised treatment, women receiving hormone replacement therapy early after menopause had a significantly reduced risk of mortality, heart failure, or myocardial infarction, without any apparent increase in risk of cancer, venous thromboembolism, or stroke.

So estrogen is not only preventing menopause symptoms for me but may also be protecting against heart disease, which runs in my family. In spite of these more recent results, Medicare continues to behave as though WHI 2002 were the final word on HRT and even to generalize its findings to cases like mine (estrogen-only versus estrogen-plus-progestin) to which they are not relevant. There has been little acknowledgement of the harm done to women by the study and the way it was presented to the public. Millions of women have suffered menopause symptoms needlessly and have been denied the possible benefits of estrogens. Some scientists at Yale believe that as many as 50,000 women may have died prematurely of heart disease between 2002 and 2011 because of discontinuing estrogen-only therapy.

I do not have any major illnesses and I rarely get sick at all. My good health has probably already saved the health care system thousands of dollars. It would seem to be in everyone’s best interests to allow me to continue what I have been doing. I hope that you will be able to help me with this situation. I have heard from other women who have had the same experience. Thank you for taking the time to read this message.

Yours sincerely,

Gretchen Kromer