Sunday, May 21, 2017

Cancer, cost, hope, and the responsibility of physicians

The headline on a recent article by Marilynn Marchione of the Associated Press, as featured in the Arizona Daily Star, is “Few doctors discuss cancer costs with patients, study finds”, and that about covers it. The actual study previewed in the article, which will be presented at the American Society for Clinical Oncology (ASCO) conference in Chicago in June, was led by Dr. Rahma Warsame of Mayo Clinic. It recorded clinical encounters at three cancer sites (Mayo, USC, and LA County) and discovered that the often extraordinarily high cost of cancer care was not usually discussed; discussion happened in just 151 of 529 visits, and in only 45 of those cases, less than 1/3, was the issue brought up by the doctor rather than the patient.

The article suggested several reasons for this. One was that the visits were short, 15 minutes at USC and LA County (about typical, though, across the country), and 30 minutes at Mayo. Another was that doctors are trained to diagnose and recommend treatment rather than to focus on the cost. A third is that the doctors themselves might not know the costs of the treatment. And, for a combination of both of those reasons, they might be uncomfortable talking about the cost. Given that these treatments can easily cost $100,000 a year or more, this is not fair to patients. While good insurance might cover the cost, not everyone has good insurance. In addition to the uninsured, many more people have crappy insurance plans with poor benefits and lifetime caps that are easily exceeded with the cost of cancer care. For most of these folks, the answer is go broke and bankrupt, or die without treatment. From a health point of view, this is not a desirable state of affairs. From a medical point of view of trying to do the best for a patient, it is an abrogation of the obligation to provide the best care. From a moral point of view, it is reprehensible. From some points of view, however, it must be ok, because this is the situation we are in, and it is not by accident. And that is tremendously distressing.

But who would have such a despicable point of view? We can start with the organizations that make money from such care. Of course, this includes the very clinical oncologists who are the members of the ASCO, but they are the least of the beneficiaries. Indeed, I feel comfortable saying that most oncologists would enthusiastically welcome lower costs for chemotherapy. The biggest winners are the drug manufacturers, who charge fantastic amounts for these drugs, and the hospitals and “cancer centers” that provide them. A large part of this profit comes from the reimbursement from insurance companies, which, in addition to paying the cost of the drug, also pay an fee to the hospital for administering the drug that is, frankly, exorbitant and far more than is paid for comparable work in provision of most other care. Indeed, this is why there is such an apparent explosion of cancer centers. It is not because of the explosion of cancer; it is because they are big profit centers and every hospital wants their own to try to lure cancer patients (those who are well-insured, it goes without saying) away from their competitors. And, in a step back from my confidence in the patient-centeredness of oncologists, those groups of oncologists who own independent cancer centers outside of hospitals, and make lots of money on it.

Why would insurers pay such high prices? Medicare pays a pretty high “administration fee”, and most private insurers reimburse at multiples of Medicare. Also, insurers can just raise their rates to cover these costs, especially if they value (as in “appreciate the clout because of the number of patients they control”) the relationship with a particular hospital, cancer center, or health system as described in Elisabeth Rosenthal’s “An American Sickness” and discussed in my blog post “United Airlines, health care, and a system designed to privilege the powerful” (April 15, 2017).

Students learn very little about the cost of care in medical school. There are beginning to be some courses that introduce cost-consciousness, but they are uncommon and limited, although even residents and students have access to smartphone information, through apps such as ePocrates®, that provides information about drugs, and often cost.  But is true that these doctors do not know the cost of the care that they are providing? Certainly while the clinical oncologist may not know the exact dollar amount, they know that it is a lot. And it is irresponsible to not discuss this with patients, to help them understand what they are getting into when they start treatment.

Drugs are only one component of the cost of care; a huge one in cancer, but radiation therapy can be even more. As I have discussed before, the real problem is that no one knows what anything actually costs. Yes, hospitals have “charge masters”, but they are not only dense and hard to find (especially for patients) but not that relevant; these charges are adjusted dramatically depending upon insurance. Medicare is unique in that it sets the amounts that it will pay (a lot for chemotherapy), but other insurers pay varying amounts depending upon the contracts that they have arranged with the hospital. Thus we have the irony (which I discussed in “Integrated Health Systems and Cost: The Price is the thing!”,December 20, 2015) that smaller cities with large integrated health systems have some of the lowest costs for Medicare (because they can create efficiencies) but some of the highest costs for private insurers (because they “own” the market and can charge more).

The real issue is that people should be able to get the care that they need and is medically indicated and has evidence to back its effectiveness without going broke. Physicians can no longer hide behind the first half of that sentence, saying “I recommended the care that they need and is evidence-based” (although certainly their recommendations should always be evidence-based!) without considering the cost. On the other hand, the health system of the US should ensure that everyone is covered for necessary care. One way of having enough money to do this is not providing unnecessary, evidence-free care to some people just because they or their insurance will pay for it.

This also means that people should not expect it. As horrific as it is for you or a loved one to be dying of cancer, it is unreasonable to expect that experimental, hopeful, or completely wishful-thinking treatments would or should be paid for by someone else, and it is generally a bad idea to try to pay for them yourself since they won’t work. Some years back, my friend was dying of an aggressive cancer. A bone marrow transplant failed. The genetics of his cancer were such that it was destined to fail. The cancer center (arguably the “best” place in the US for his type of cancer) offered him the opportunity for a second transplant, but the insurance company rightly refused to pay. His family cashed in his entire retirement to pay. Predictably, the transplant failed, and his family was left without any savings. The doctors knew that it would almost certainly fail, and should have known what it would cost, and thus not recommended it. An agnostic stance on cost is unacceptable.

The media coverage of the ACA and the Republican repeal plan makes clear that there are many people who do not want to pay for insurance coverage when they are healthy, but want everything taken care of when they or their family are sick. Then they get desperate and might spend the last of their savings on treatments that will not work, whether quack drugs like laetrile or futile attempts offered by the medical community, such as happened to my friend. It is the responsibility of doctors to know the cost of treatments they recommend and discuss this with their patients, and to not offer ineffective treatments. It is wise for patients also to ask for this, although many are unempowered and intimidated by the medical system.

But if we all pay in when we can and benefit when we need it, the system would work. It’s called single payer, or Medicare for all. Unfortunately, our system, with or without ACA, is nowhere close.

Sunday, May 14, 2017

Contraception, women's health and dignity, teens, and stupid legislators

A bill before the Maine legislature would allow women to obtain a year’s worth of oral contraceptives at a time, rather than the previous 3-month limit. This is a good thing, as argued by its sponsors and supporters. Women typically take oral contraceptives for long periods of time, and the requirement that they return to refill their prescriptions every 3 months is at best an inconvenience and at worst a burden. It is a burden women should not have. Indeed, there is no good reason to require a prescription for oral contraceptives at all.

This does not mean that there are no reasons put forward by opponents; if there were none, there would be no opponents. Overall, the opposing arguments fall into 3 categories: money, control, and wacko paranoia. If women only have to fill prescriptions once a year there will be fewer prescriptions being filled, which could be a small hit to pharmacies. The bigger objection is from insurers, as addressed in an article in the Portland Press-Herald of April 19, who worry that it could become a “mandate” for coverage with no cost share for other contraceptives, particularly those that are more expensive for insurers.

Control is a big and insidious issue. The idea that women are incapable of making their own decisions, particularly with regard to their reproductive systems, is as outrageous as it is persistent. For generations women have fought and often won struggles to be considered legally as “people” (implicit definition: men); to have the vote, to own property, to divorce. But no area has been as fraught with (yes, “fraught” requires a preposition!) opposition as the entire area of women’s reproduction. From before the time of Margaret Sanger, every source of pressure – religious, economic, and legal – has been brought to bear against the idea that women should have control of their own bodies and particularly their reproduction. The struggle continues; abortion rights are the most vulnerable today, but as the opposition to the Maine bill illustrates, contraceptive rights are scarcely secure.

Even among the biggest supporters of contraception, there can be poor decisions. Nearly 20 years ago I sat on a Planned Parenthood advisory board, and many of its members were surprised that I strongly opposed a requirement that women have a Pap smear before receiving a contraceptive prescription. The logic of those who supported it was that the inducement of receiving contraceptives would encourage women to get their Pap, which was then recommended. My position was that the negative incentive of the Pap (and associated pelvic examination, see below) would keep women, especially young women and teens, from getting their contraceptives, and thus likely increase unwanted pregnancies. I am sure that that Planned Parenthood, and other contraceptive providers, no longer have such a requirement. Indeed, we no longer recommend Pap smears for women under the age of 21, and for others, they are recommended only every 3 years. Regarding the screening pelvic examination, it simply violates the first criterion for a screening test – there must be condition that can be screened for in an asymptomatic person. This has led the American College of Physicians, having reviewed the evidence, to recommend against it, while the US Preventive Services Task Force (USPSTF) somewhat incomprehensibly, gives it an “I” (evidence is insufficient to recommend for or against) recommendation. This is summarized in a recent review from the Agency for Health Research and Quality (AHRQ). The American College of Obstetricians and Gynecologists still basically advocates it, although it suggests the decision be made individually between the woman and her doctor, no real change from when I discussed it on July 3, 2014 (”The screening pelvic examination: not annual, not ever”).

Being a major provider of contraception does not save PP from the wrath of Congressional Republicans; indeed, while abortion is the flaming tip of the spear of conservative opposition, the right’s opposition to PP is also against those that do not do abortions, but mainly provide contraception and other women’s health services. The good news is that the GOP may be unable to attach defunding PP to the “health” bill (Obamacare repeal) because it is being done at a budget resolution. You might think that providing contraception would be seen as a good thing, since fewer unwanted pregnancies would lead to fewer abortions, but this is not their logic. [I think that they are, basically, anti-sex, at least that practiced by others, as demonstrated by all the patently false claims we hear constantly in school-based clinics that prescribing contraception will “encourage” sex.]

Of course, it does not. Hormones encourage sex, yes. Social pressure encourages sex, for sure. But not contraceptives; what they do is prevent pregnancy. Amazing. And if the whole campaign against PP, as well as opposition to allowing a year’s worth of OCPs, is grounded in a mindset that wants to control women, the issue for young women (and their partners) is far worse. They are seen as not only women, but immature and incapable of making wise decisions. There is some basis for the idea that they are immature, as parents know; the brain is not fully developed until at least the mid-20s and the last part to develop is the ability to make “executive decisions” – taking the information that you have, looking at it completely and objectively, and making a smart choice.  This is why teens and young adults make poor decisions in driving and, conversely, make the best soldiers.

But this is not a justification for restricting access to contraceptives, condoms, or other health services that might prevent bad outcomes. Because teens make not make the most mature decisions, and often regret them later, it doesn’t mean that they won’t make them. So we need to make it as easy as possible for them to not have long-lasting negative consequences, like STIs and unintended pregnancy. There need to be as few barriers as possible for young people to not get (or make another) pregnant, to not get preventable sexually-transmitted infections (STIs). These would include making oral contraceptives over the counter, making condoms in front of the counter, and preferably free. Should a young woman (or man) come to a clinic for care, invite them in, see them quickly, meet their needs. For goodness sake, don’t make it hard, don’t send them somewhere else to register as they’ll walk out the door!

The editorial in the New York Times, May 13, 2017, “The health care bill’s insults to women”, documents the degree to which women in rural and underserved areas, where more than half of PP’s clinics are, will lose if Medicaid doesn’t cover services at PP. It notes that in 105 counties, PP is the only provider of reproductive health services. The editorial starts with insensitive “sophomoric” quotes from several congressmen and senators, including one from Kansas Sen. Pat Roberts that “I wouldn’t want to lose my mammograms!”. Sen. Roberts would be well advised to identify which of the areas in Kansas, particularly in the very rural “Big First” district he once represented as a congressman, would be among those losing services. A lot, actually, especially since one OB/Gyn from Great Bend is now busy representing the district in Congress. Of course, Dr. Roger “the poor just don’t want health care” Marshall probably didn’t take care of many underserved folks.

This is not the way to go. Our goal must be to increase health as much as possible, not to create obstacles to it.

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