Komen and Planned Parenthood: The politics of abortion meet the politics of breast cancer

As of this posting it appears that Komen has restored its funding for Planned Parenthood. I thought I would run this post anyway. I think it makes some important points.

As reported in the New York Times on February 1, 2012, “Cancer group halts financing to Planned Parenthood”, the Susan G. Komen Foundation will abruptly end a program that gave about $700,000 to 19 Planned Parenthood (PP) affiliates to fund breast mammograms and ultrasounds for women who cannot afford them. Just to be clear, the Komen Foundation, the world’s largest breast cancer foundation which is famous for its pink ribbons and “Run for the Cure” races, has not changed its position on screening for breast cancer. It just doesn’t want to fund this screeining through Planned Parenthood, which will present a problem for the three-quarters of a million women who have had their mammograms through that organization.

Why? There has been a very long standing relationship between these two organizations committed to women’s health, and this decision seems to be very sudden. According to the Times, “A spokeswoman for the Komen foundation, Leslie Aun, told The Associated Press that the main factor in the decision was a new rule adopted by Komen that prohibits grants to organizations being investigated by local, state or federal authorities. Ms. Aun told The A.P. that Planned Parenthood was therefore disqualified from financing because of an inquiry being conducted by Representative Cliff Stearns, Republican of Florida, who is looking at how Planned Parenthood spends and reports its money.”

On the face of it, this is absurd; any state legislator can do an investigation into any organization for any reason, and they do. Unlike investigations by law enforcement bodies, in which presumably there is at least a reasonable suspicion of illegal activity. It can only be inferred that this “new rule” was specifically instituted to remove funding for PP. And Komen didn’t have to wait for Rep. Stearns; my state of Kansas has been regularly investigating our Planned Parenthood, starting under former Attorney General Phill Kline, who illegally kept subpoenaed records after he left office. When it finally went to trial after several years, the case was decided by a jury in less than 30 minutes, for PP. More recently, the current administration (also, coincidentally, Republican) has tried promulgating new health department rules regulating abortion providers that were absurdly picky, such as the size of janitorial closets. This has also been discarded.

Wait, Planned Parenthood does abortions? Could that be part of the reason? Why yes. Some, but not all, PP affiliates perform abortions. PP provides comprehensive women’s health services, including contraception and education, as well as breast cancer screening. The Times article notes that many have suggested that it is pressure from right-wing anti-abortion groups that has caused this action. For example, “…in December, LifeWay Christian Resources, which is owned by the Southern Baptist Convention, said it was recalling a pink Bible it was selling at Walmart and other stores because a dollar per copy was going to the Komen foundation and the foundation supported Planned Parenthood.” Of course, this is not really a different reason; the reason that Rep. Stearns and AG Kline and others have for investigating PP is because they do abortions.

In further “explanation” (since the original one was so nonsensical), the Komen “…foundation issued a statement saying it was seeking to ‘strengthen our grants program’ and had ‘implemented more stringent eligibility and performance criteria….While it is regrettable when changes in priorities and policies affect any of our grantees, such as a longstanding partner like Planned Parenthood, we must continue to evolve to best meet the needs of the women we serve and most fully advance our mission.” I had to include this last sentence so that I can recommend that you copy it and save it for a time when you need a piece of corporate double-speak jargon that says nothing except “We’re lying here.”

Planned Parenthood affiliates who do offer abortion services see them as part of the continuum of women’s health care. They offer sex education and contraception, but sometimes this fails – or hasn’t been used -- and women seek an abortion, which may be their first contact with PP. And they may then avail themselves of PP’s other services so they do not have another unwanted pregnancy.  Of course, there are many people who are opposed to abortion who support these other missions (contraception and sex education, as well as breast cancer screening). Therefore, PP usually segregates its funds so that only donations that are unrestricted or specifically intended to support abortion services are used for that purpose. However, there are many others, particularly organized “right-to-life” groups, who are not only opposed to abortion, but to the other missions as well.

A rational, data-driven approach would note that the only things that have ever been shown to reduce the abortion rate are comprehensive sex education and easy availability of contraception. This is why the abortion rate in many countries where abortion is legal is lower than in others where it is not – because those same countries provide sex education and contraception. And, of course, they also provide safe abortions so that the women who receive them are much less likely to develop infections, become sterile, or die.

The only way to understand the opposition to contraception and sex education is to recognize that it is really about being opposed to sex. If you hold the view that sex should only occur in marriage, and then only for the purpose of procreation (thus, only heterosexual marriage), and should not be for fun (and maybe should not ever be fun) this starts to make sense. In a bizarre way. Of course, this excepts the many religious and anti-abortion leaders who are involved in active and extramarital sex. They seem to have no problem telling women what to do with their lives, while living their own lives in total hypocrisy. Of course, but these are mostly men, so what do you expect? They don’t get pregnant.

In another big news item in the same issue of the Times, we are informed that rates of second surgery after lumpectomy for breast cancer vary widely by surgeon, from 0% - 70%. (Breast Cancer Surgery Rules Are Called Unclear by Denise Grady reports on Variability in Reexcision Following Breast Conservation Surgery by Lawrence McCahill and colleagues, published in JAMA, February 1, 2012. In doing lumpectomy for breast cancer, there is a cosmetic reason for taking only the least amount of tissue necessary to remove all the cancer. After all, this is the reason that lumpectomy was developed to replace mastectomy. Sometimes, on pathological examination, the “margins” are not “clear”; that is, cancer cells are found microscopically up to or past the border of the excision, and an additional surgery is required to get the rest. The question is whether there are surgeons who regularly seem to do this more often, that is take too little tissue, rather than random variation; the answer seems to be “yes”.

However, the study shows that there seem to be many more surgeons who often do a second surgery even though the margins are clear than there are surgeons who regularly take too little and need to repeat the surgery. This also means that many surgeons who have the former practice may often take too much tissue the first time to avoid the repeat surgery. This is because they believe that there need to be larger margins of normal tissue, of 2-5mm, between the cancer the edge of the excision. Comments by McCahill and other expert breast surgeons indicate that there is no data showing the larger margins provide any lower rate of recurrence than smaller ones.

What is clear, however, is that cancers found earlier and smaller are more likely to require less invasive surgery and have a greater chance of recovery. While the age of starting and the frequency of screening may be controversial (see my perspective on October 30, 2010, Breast cancer screening: conflicting evidence? what are the important questions for health?), it is hard to argue that having making it more difficult to obtain that screening for 750,000 women who use Planned Parenthood is good policy if your goal is to identify and treat breast cancer as early as possible.

Which, of course, is supposed to be the Komen Foundation’s mission.

 The “Lede” story on the Komen Foundation’s reversal, Cancer Group Backs Down on Cutting Off Planned Parenthood quotes Komen’s Twitter post (@komenforthecure): “We want to apologize for recent decisions that cast doubt upon our commitment to our mission of saving women’s lives.”

And for thinking that they could just do this and not ignite a firestorm of protest. Good to see some life in the reproductive rights movement! The anti-abortion-people-who-talk-only-to-themselves-so-much-they-think-everyone-agrees-with-them were unsuccessful in this attempt. Hopefully the women’s health and pro-choice community can remember that these rights are not guaranteed by anything but the willingness of the people to fight for them.

Direct-to-Consumer Advertising and the Role of Advocacy Organizations: Two Threats to Evidence Based Testing

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Two recent “Commentaries” in the same issue of JAMA address different challenges to the implementation of evidence-based practice guidelines. One, “Direct-to-consumer cardiac screening and suspect risk evaluation” by Lovett and Liang[1] addresses the challenges posed by the potential for profit that occurs when companies market screening tests direct to the consumer (DTC) that may not be indicated, may not be indicated for the people who it is marketing to, or may even be harmful to the recipients of such screening. This harm can, of course be physical, as in untoward events, or in risks inherent in the further procedures for those who “screen positive” but turn out to have been “false positives”. The harm is also financial, for there is a cost to doing these tests – to the individual (sometimes) or to their insurer; in the latter case, whether that insurance is public (e.g., Medicare, Medicaid) or private, the cost is to all of us. And, of course, that cost is the reason for such marketing, as it is what translates into profit for the company selling the test.

In the case of cardiac screening, Lovett and Liang, using the recommendations of the US Preventive Services Task Force (USPSTF), the American Heart Association/American College of Cardiology Foundation (ACCF/AHA), describe heavily-marketed tests that can cause more harm than benefit to the many people who are not in the narrowly-targeted group for whom the tests are indicated; other tests which have valid indications although, again, in the appropriate populations; and finally tests for which there is little or no evidence. The marketing of these tests can incur anxiety or fear in people who have no reason to be worried about these conditions and may occur outside the physician-patient relationship, thereby not allowing people to get the physician’s analysis of the results even when the test is indicated, and cost a great deal of money. This is particularly true when a possibly-positive test needs to be followed up with a number of other tests to rule it out, this time covered by insurance. They make several suggestions for how DTC companies should be regulated. They conclude that, “DTC cardiac testing may pose more harm than benefit to many consumers. Oversight efforts are needed to protect the public from inappropriate testing and to ensure that the health care dollar is spent on care promoting health in an evidence-based fashion.” I would say that is a mild suggestion!

The issue raised by the other article is probably more insidious;  because it lacks the obvious profit motive present in DTC marketing, we may be less wary.  In “Health advocacy organizations and evidence based medicine”[2], Sheila Rothman examines the tendency for groups that are created around a single disease (e.g., breast cancer, epilepsy, autism, etc.) to push for screening tests, diagnostic tests, and treatments for “their” disease whether or not there is evidence to support their use. In response to an Institute of Medicine (IOM) survey that sought to identify what tests and treatments should be included in a basic benefits package, “They contended that EBM [evidence-based medicine] should serve merely as an aid in medical decision making, not as the basis for it. Outcome data, they insist, should not limit patient choice or restrict available services.” This is truly remarkable. These groups are basically saying “our disease is so important we should screen everyone, everyone who screens positive should have diagnostic tests, and everyone who has it should be able to get any treatment that they want, even if there is weak or no evidence for its efficacy. And, of course, someone else should pay for it.” This would probably be unreasonable if there was only one such disease, but there are hundreds and each is the “most important” for its advocacy organization. The reason that this is more insidious is that these groups are not seeking to make a profit on these tests and treatments (usually); they are (usually) functioning as advocates for people who are truly suffering.

However, the fact that people are truly suffering does not mean that society should screen large numbers of low-risk people for all of these conditions. There are, of course, some things that we should and do screen everyone for. We screen all newborns for a set on genetic or congenital conditions for which identification makes all the difference. Two good examples are congenital hypothyroidism (in which the newborn thyroid doesn’t function) and phenylketonuria (in which the newborn lacks the enzyme to break down a certain protein). Undetected (and thus untreated) these lead to serious disease, mental retardation and death. Detected, and easily treated (by thyroid hormone replacement and avoidance of phenylalanine-containing foods, respectively) the child can lead a normal life. But every condition with an advocacy organization is not one of these, nor are the screening, diagnostic tests, and treatments so straightforward.

Sometimes, these advocacy groups may indeed have a financial interest in a test or treatment, but even when they do not, they may push for policies that allow physicians to prescribe expensive brand-name drugs even when generic drugs have not been tried. Or to demand the availability of expensive but unproven treatments: “’Autism Speaks’ criticized insurance companies that refused to pay $300 000 for 4 years of applied behavior analysis therapy for toddlers, despite a lack of evidence of effectiveness.” That is a lot of money even if we know a treatment is effective, but it is an awful lot when we do not. The issue is that this organization is focused only on people with “its” disease, and has no concern for what the money could otherwise be used for to treat other people with proven therapies. Maybe this is their role, but there is no reason that the rest of society must buy into this logic.

Cancer, of course, has the strongest set of advocacy organizations, and breast cancer is far and away the leader. I wrote about the issue of advocacy versus evidence regarding the most recent USPSTF recommendations for screening in Breast Cancer Screening and Evidence-based Medicine, November 25, 2009. More recently I looked at these issues, including both breast and prostate cancer screening, in Men’s Health? Women’s Health? Valid screening opportunities or “Hallmark Holidays”?, March 15, 2011. In this context, the Food and Drug Administration recently approved several new drugs for metastatic prostate cancer. The cost can be over $90,000 for each treatment cycle and might exceed $500,000. In the June 28, 2011 NY Times article, “New prostate cancer drugs extend lives but raise costs”, Andrew Pollack notes that Medicare is going to look into whether to pay for these drugs, but that “…some patient advocates and politicians portrayed the review as a step toward rationing.” Excuse me? Don’t we already have rationing based on whether or not one has money or insurance? I recently addressed this in my recent post The real face of lack of access to health care, June 19, 2011. It is not ok for “patient advocates” to advocate for some people to get any kind of treatment paid for by someone else (e.g., Medicare) when everyone who has that medical need is not able to get care. And since there will be more things to spend money on than there is money, there needs to be a more rational system than “Me first!” This system is the use of evidence-based guidelines.

Rothman concludes her commentary:

“However valuable independent advocacy organizations are for a democratic society and however important their services provided to targeted populations, their advocacy positions and the related underlying assumptions must be scrutinized with the same diligence as those of other stakeholders. There should be no automatic assumption that all health advocacy organizations deserve special standing or represent the common good.” 

And for good reason, because they probably do not.

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[1] Lovett KM, Liang BA, “Direct-to-consumer cardiac screening and suspect risk evaluation “,JAMA  2011Jun23/29;305(24):2567-8.

[2] Rothman SM, “Health advocacy organizations and evidence based medicine”, JAMA  2011Jun23/29;305(24):2569-10.