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Notebook Medicine

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Physicians, heal thyselves

Politics and the AMA’s shrinking membership

The American Medical Association (AMA) considers itself the voice of American doctors, and it used that bully pulpit in its recent fight against the American Health Care Act (also called the Obamacare replacement bill). The New York Times cited it as “a powerful lobbying group representing the nation’s doctors”; to The Huffington Post, it was simply “the doctors.” There’s just one problem with this, a truth that the AMA doesn’t like to discuss: Most doctors aren’t members.

The group won’t say how many of its members are still in medical school, but the benefits that come with an all-but-free student membership—everything from anatomy flashcards to a UPS shipping discount—mean that thousands of students sign up each year. Most don’t stick around when they graduate: A 2011 article in the CMA Journal estimated that only about 15 percent of practicing U.S. doctors are members.

The article cited “bowling alone,” or declining interest in joining organizations, as a potential reason. Specialty organizations often attract what interest remains—roughly half of surgeons, for example, belong to the American College of Surgeons. One other possibility the author mentions: the AMA’s politics.

The AMA famously supported Obamacare, losing thousands of members in the process, and the resolutions it adopted at its 2016 annual meeting read like the hard left’s wish list: One affirmed the “medical necessity” of sex-change operations, while another fretted that religiously affiliated hospitals will make abortions harder to find. Still others pushed gun control, jail alternative programs, gentler language by police officers, and changes to school sex-ed curricula. A resolution opposing assisted suicide got a thumbs-down, whereas a resolution for the euphemistic “aid-in-dying” will get a closer look by a committee.

Most resolutions were not political: Between assorted pleas for less bureaucracy and simplified paperwork, the AMA also advocated sunscreen use, safe ways to dispose of unwanted prescription drugs, and steps to prevent dosing errors in hospitals. But where politics enter the picture, the direction is almost always a hard left.

The same story—only more so—shows up with the American College of Obstetricians and Gynecologists. In a 2007 “ethics opinion,” ACOG stated that doctors and nurses should not be allowed to cite conscience as a reason they would not participate in abortions. ACOG stated in the same article that “claims of conscience are not always genuine” and may represent “an agenda based on religious beliefs.” This isn’t academic: As the pre-eminent OB-GYN association, ACOG influences national policy in its field.

Alternatives exist, but they are small: The Association of American Physicians and Surgeons counts only about 5,000 members. The American Association of Pro-Life Obstetricians and Gynecologists claims 2,500 members, but not all are doctors. The American College of Pediatricians—founded by a past president of the 60,000-strong American Academy of Pediatrics in protest of AAP’s stance on adoption in same-sex “marriages”—has about 500. (That stand earned ACP the predictable stamp of “hate group” from the Southern Poverty Law Center.)

It wasn’t always this way: The AMA counted some 75 percent of American doctors as members in the 1950s. Not coincidentally, its focus was on issues of concern to all doctors: opposing the primitive HMOs of the time and leading resistance to the proposals that ultimately became Medicare. If the AMA would like to reverse its steady membership decline and truly speak for American doctors once more, one prescription stands out: remembering its roots.

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Krieg Barrie

(Krieg Barrie)


A fresh pair of genes?

Gene editing could alter human embryos for life

Do genes equal destiny? Anatomically speaking, yes: A child with two X chromosomes will be a girl, and a child with one X and one Y will be a boy. Genes help determine everything from height and hair color to whether a person will enjoy certain flavors. They can also act like mosquitoes and ticks, transmitting disease.

Research on the genome is inspiring ideas for genetics-based treatments. Already, surgeons often send tissue samples from malignant tumors for genetic analysis, so that they can customize a patient’s chemotherapy to target his cancer’s specific genetic mutation. This genetics-inspired technique merely guides treatment: The treatment does not modify a patient’s DNA.

What if a treatment does? That’s gene editing, an attempt to change DNA in living patients. Since all cancers and many other diseases are caused by genetic mutations, successful treatments might lessen much human suffering. We may not know the side effects of a given attempt, but for the kind of dreaded diseases attracting research attention—Huntington’s, muscular dystrophy, sickle cell anemia—a patient might reasonably want to take a chance. Moreover, as with surgery, any benefit or harm is limited to that one patient, who can make an informed decision about whether to proceed.

Much more powerful—and controversial—is heritable gene editing, also called germ line gene editing. These edits would happen at the embryonic stage, meaning that they would affect every cell of a patient’s body and pass to subsequent generations like any gene. The studies of this technique require human embryos, which researchers destroy at the end of each experiment. One source, according to England’s Francis Crick Institute: “Those left over from patients’ fertility treatment and donated by patients. They will be surplus to the patients’ treatment or family-building needs.”

Advocates of caution point out that we do not understand much of the human genome and can’t accurately predict what effect a change would have. Some of what we know from human nature also discourages here: In a Wall Street Journal opinion piece, Marcy Darnovsky of the Center for Genetics and Society argues that “a few advocates of gene editing for reproduction are openly enthusiastic about ‘enhancing’ future generations. … It’s all too easy to imagine fertility clinics offering ‘offspring upgrades’ to affluent parents.”

Science fiction writers have long contemplated such a thing, but life may soon imitate art: CRISPR, a technology used to edit DNA sequences, has become routine for genetic research in mice and other small animals. In 2014, experiments with it led to the birth of twin genetically modified macaque monkeys.

Restrictions on human embryo research are common. Germany’s law, the 1991 Embryonenschutzgesetz (embryo protection law), is among the most stringent, effectively banning any use of human embryos for research. The country’s past shaped its attitude: John Robertson of The University of Texas School of Law wrote in the Columbia Journal of Transnational Law that “revulsion to … the cruel medical experiments that inspired the Nuremberg Code for human experimentation” led to the law. Human genome editing and the creation of human-animal hybrids in Germany both carry penalties of up to five years in jail.

Elsewhere, attitudes are more lenient: In 2015, researchers at China’s Sun Yat-sen University edited the genomes of human embryos with CRISPR. The experiment did not lead to pregnancy, but laid a technical groundwork for future attempts. A second Chinese team published its attempts to engineer embryos’ genomes for HIV resistance in 2016, intensifying debate and leading to calls for a worldwide embargo on embryo research.

As gene editing tools gain power, ethical dilemmas multiply. When, if ever, is it acceptable to use powerful tools with poorly understood effects? As geneticist J. Craig Venter noted in Time, “the techniques have become easier to perform, [but] the ethical issues are not easier.”

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Pablo Martinez Monsivais/AP

Heather Bresch holds up an EpiPen pack while testifying on Capitol Hill. (Pablo Martinez Monsivais/AP)


Hard to swallow

Sky-high drug prices spark anger, but here are ways to beat them

Ubiquitous, lifesaving, expensive: the EpiPen has become the symbol of soaring drug prices. The ready-to-use treatment for allergic emergencies comes in packs of two, whose price has quadrupled since 2004 to over $600. Its maker Mylan announced a cheaper version, but public outrage continued—especially when USA Today reported that former National Association of State Boards of Education president Gayle Manchin, who promoted EpiPen mandates for schools during her presidency, is the mother of Mylan CEO Heather Bresch. Bernie Sanders thundered on Twitter, “While Americans are dying because they can’t afford Mylan’s egregious drug prices, the company’s CEO got a 671% raise to over $18 million.”

Congressional hearings about the price of EpiPens followed, but Mylan is not the only company raising prices aggressively. Canada-based Valeant also buys the rights to drugs and increases their prices—by 212 percent in one case and 525 percent in another, both on the same day it gained the rights to them. Perhaps most infamous: Turing Pharmaceuticals, which raised the price for a single tablet of the anti-parasitic Daraprim from $13.50 to $750 after buying the U.S. rights to sell it. The drug, whose discovery dates to 1952, sells in Australia for 26 cents per dose.

Critics fault the FDA’s byzantine drug-approval system for allowing companies de facto monopolies. Drug patents normally expire after seven years, but companies have mastered ways of extending them: They then encourage doctors to switch patients to closely related drugs (with new patents) as generic competition finally appears for the old ones. Drug shortages contribute too, as when the Lyme disease drug doxycycline became scarce in 2014.

What can patients do? Shop around. Comparison shopping once required a lot of time on hold with pharmacies, but online tools like GoodRx and Blink Health simplify it greatly. 

What can patients do? First, shop around, since prices can vary wildly from one pharmacy to another. As one example, the anti--nausea drug ondansetron ranged from $13 to $183 for a 30-day prescription at pharmacies in my area. Comparison shopping once required a lot of time on hold with pharmacies, but online tools like GoodRx and Blink Health simplify it greatly. Consumer Reports also suggests looking outside the traditional pharmacy chains: independent local pharmacies, grocery stores, even Costco (whose pharmacy doesn’t require a membership) all often have lower prices. Surprisingly, simply asking for a better price may also help.

Where an individual drug is expensive everywhere, cheaper options often exist. For example, many prescriptions that combine two active ingredients in one pill cost more than taking the same ingredients separately. One egregious example is Duexis, combining two cheap over-the-counter medicines to make a prescription medicine at a price that can top $800 a month. Manufacturers of such combination drugs argue that taking one pill instead of two justifies the price, but Duexis’ active ingredients sell separately in generic form—over the counter—for $10 a month.

Families of similar medications also often have cheaper and more expensive choices, and where they don’t, a doctor may be able to prescribe a more affordable class of drug for the same condition. One choice many experts don’t recommend: “Canadian” online pharmacies, many of which ship drugs from poorly regulated sources in India and China. Overseas, counterfeit, and improperly made drugs are a major problem.

Vestiges of competition still exist in the drug market: compounding pharmacies now sell Daraprim’s active ingredient for $1 a dose, and CVS recently announced a generic EpiPen equivalent for $110 a pair. The next four years also herald change, even if details remain uncertain. President Trump has stated the drug companies are “getting away with murder”—and in a rare moment for both men, Bernie Sanders’ reply began, “Trump is right.”

—Charles Horton is a Pittsburgh doctor and a graduate of the World Journalism Institute mid-career course


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