After New York Passes Lesbian and Gay Marriage,
A Challenge to the Media

I am thrilled to be a New Yorker today!! Marriage is a fundamental right for all Americans. But it is far from over.  I am troubled that so many of my peers ignore lesbian and gay issues, leaving it for someone else to cover. And I am not talking about the obvious villains here like Fox News, but health and science reporters and bloggers, who consider themselves at the forefront of science advancement, social justice, and investigative reporting working for a better planet and fairness on many important issues.

Lesbian, gay, bisexual, and transgender people are not—and should not be treated as if they are at the margins of society.

Advancements in lesbian, gay, bisexual, and transgender policies this year are notable. The Institute of Medicine, for the first time recognized that health researchers should include lesbians, gays, bisexual, and transgender people in research. New York City Health and Hospitals Corporation passed and is now implementing a new initiative to ratchet up staff training and care for lesbian, gay, bisexual, and transgender people, starting with the premise: “If You Don’t Know Me, How Can You Treat Me.” In April 2010, President Obama extended hospital visitation and participation in medical decision making to LGBT partners.

But it is not all progress by any means. There have been setbacks and disappointments. It’s just a handful of states with gay marriage on the books. And getting quality healthcare for lesbians and gays wherever they live needs to become part of the mainstream. And President Obama has a gay marriage problem: he’ll press for rights, but not gay marriage. And this is not all: worst of all, there are hate crimes, even in the great state of New York. They must stop and offenders must be prosecuted.

Anybody who wants to ratchet up the conversation on these issues, let’s go! Please contact me below, follow me on twitter at lauranewmanny, or send me an email, to patientpov “at” gmail “dot” com, and most importantly, talk with each other.

There is a huge opportunity for progressive media to use all the tools of new and old media to educate the public. Let’s move. It’s never too late to be inclusive.  There is so much to say. Let’s expand the audience.

Conservative Drug Prescribing:
A Plea for Principles and Action

Does the concept of “conservative drug prescribing,” where doctors evaluate your medical history, examine you thoroughly, and think of ways to help you, without reaching for the latest new pill, mean much to you? If your experience is anything like mine—and I am in basically good health with no serious conditions, I have seen doctors offer the latest sleep and asthma medicines as a first step.

But maybe I would do well to think more long-term: can I develop better sleep hygiene first, consider stress reduction or meditation,  and if that didn’t work, try a  medicine with a long-term track record. Of course, newer medicines sometimes do offer advantages, but the deluge of drug promotions make me skeptical.

There is a pill for just about everything these days: real, serious conditions and some, well, you have to wonder. If you watch television, you see the ads constantly, and if you don’t watch tv, you won’t miss out either: in far too many doctors’ offices, you will find a dizzying array of mementoes from drug companies.

I nearly left a doctor’s office in protest recently, but I was sick. I went into the examining room, and found the examining table had bright yellow paper advertising the erectile dysfunction medication Cialis. I felt like I wanted to say a big: “EXCUSE ME, do I have to sit on you? Are you f-*$%ing kidding me?”

You mean that they cannot afford examining paper! Oh, I have read that drug use for ED is leveling off, so I guess that explains the examining table paper.

Any chance to put the idea for the drug in a patient’s or doctor’s mind – well, why not? Besides maybe a guy didn’t even come to see the doctor thinking he remotely had ED. Here’s just the prop to get that guy thinking, “why not try Cialis? –and get hooked to a new drug?

I am not a doctor, but I have seen first hand as a patient, and with family members and friends– how reaching for the next drug can be a big mistake. At worst, inappropriate prescribing and a lack of heightened vigilance can cause a complication, even death, that is related to use of the drug or a procedure that would not have occurred had the medicine been withheld. Timely adverse event reporting is nonexistent. The FDA may promote it, but patients and doctors find it too cumbersome to do.

Contemporary Medical Teaching Promotes Meds

Promotions for new drugs abound in medical education, starting in medical school, residency, and later on, at the annual medical meetings. As a result, many physicians think that they are doing the patient a favor in reaching for a new drug, rather than taking a more comprehensive look at what’s up with the patient.  Maybe the solution to a specific health problem doesn’t even reside with taking a pill at all.

That’s why I was pleased to read an article by Gordon D. Schiff, MD, Harvard Medical School, and William L. Galanter, MD, PhD, University of Illinois Chicago  in Archives of Internal Medicine, on June 13 2011 . Originally published in JAMA, on February 25, 2009, apparently, the editors found it important enough to republish in Archives now.

In their commentary, Schiff and Galanter , state that : “[conservative drug prescribing skills] are “absent or underemphasized in current medical and pharmacy education.”

Now that’s a wowser to me as a patient. But,why?  Drugs are the answer that is blasted on television and in DTC marketing. Schiff pointed out how pharmaceutical companies are in most medical schools, during training, and of course, in Continuing Medical Education, going forwards.

Principles of Conservative Drug Prescribing

In setting forth recommendations that together could help physicians prescribe more appropriately and more conservatively, Schiff and  Galanter recognize that their recommendations come in an atmosphere where pharmaceutical promotions are huge in medical training, continuing medical education, and direct-to-consumer marketing.

From the outset, Schiff and Galanter state that appropriate prescribing and skepticism must be grounded in more learning about the emergence of new drugs and safety. Doctors all too soon forget about adverse events that may have driven drugs off the market. Drugs like thalidomide, phen-fen, or rofecoxib (Vioxx) are cases in point, according to Schiff. They were tested “in limited numbers of patients with few comorbidities, typically for a relatively short time,” write the authors. “Promotional activities distort what prescribers learn about drugs.”

Years ago, I heard a leading diabetes and patient safety thinker lament how quickly some drugs go from the next best thing to off the market because of safety issues learned in the first few years of use. He said: “Remember how once it seemed like it [that new diabetes drug] was all that was out there, everyone was prescribing it, and then two years after it is pulled, and you can barely remember its name.”

A Checklist Intended for Your Doctor

Schiff and Galanter urge doctors to revamp their approach to patient care, and their approach may seem radical in a climate where medications are the center of medical education.
1.    Think Beyond Drugs
2.    Prescribe More Strategically
3.    Have a Heightened Adverse Effects Vigilance
4.    Use Caution and Skepticism Before Selecting New Drugs
5.    Forge a Shared Agenda with Patients
6.    Weigh Long-Term, Broader Impacts of Your Treatment

I wonder: do we need Atul Gawande, MD, to put this into a checklist that physicians in training and community and academic physicians use in practice?

The categories seem like pretty obvious principles of good medical practice.

Direct-to-Consumer Ads Omnipresent

Schiff acknowledges that in a climate where big pharma is omnipresent, it may not be easy to encourage patients to try behavioral changes, or try old, tried-and-true medications with an excellent track record.

Patients are encouraged to think in fragments when they see an ad for one thing after another all night long on the television. Taken in as they come, you would never get the potential for drug interactions.  You’d never think that maybe losing weight and going on a diet might be something to try before rushing to meds to assist.

Short, online quizzes are all over the web, courtesy of big pharma, that are designed to aid you in proving that you’ve got a new condition that you may never have thought about. The drugs are the answer.

Also, often misleading links to government websites and physician organizations, suggesting inaccurately that these groups support the recommended drug. What about links to the American Cancer Society, the government website MedlinePlus, which pharma increasingly makes on line, even though, what you might find there is not an endorsement at all, just some sort of background information on a condition. Many drug companies are doing this now and I wish authorities would crack down on this practice.

Curbing Pharma Messaging

There is a growing movement in medicine, in medical schools, among faculty, medical students, and residents to limit pharma involvement in teaching. It’s healthy for us all.
Schiff told me about the American Medical Students Association PharmFree Initiative a national educational medical student campaign, described on its website as “targeted at medical students in order to continue teaching the qualities of honesty, humility, and accountability in graduate medical education and beyond. Without these qualities, both the credibility of the medical community-and the public trust given to it-will erode.”

A year ago, the University of Michigan Medical School became the first medical school to say that it will no longer take money from drug and device manufacturers for coursework for doctors studying to renew their medical licenses. The project started in January, and I hope to take a look at it. This topic is controversial for sure.

Indeed, many medical leaders take exception to pharma involvement, claiming that industry is really not out to increase prescriptions, but to improve patient care overall. I’d sure like to know if my doctor is taking money from pharma and how s/he sees it.

There are more lessons here. Could the FDA and Federal Trade Commission more aggressively pursue misleading ad campaigns linking pharmaceutical promotions to “trusted” groups like Medline Plus or the National Cancer Institute—groups that never said that they promote a specific drug? I hope so.

Then there are patient satisfaction surveys. They never cover this ground. I’d like to see my doctors take a PharmFree pledge. I don’t want to ever have to sit on Cialis paper in the examining room again.
This article is the first of (probably) three on drug prescribing and you. This first one introduces the concept of conservative prescribing and the barriers to it. Others will examine efforts to control drug promotion in medical school teaching and education. A third will address a specific case of overuse of medicine.

Really!!: 30% of Employers Will Drop Health Insurance by 2014

The week opened with this scary bit of front-page news, linking it directly to Obama’s health overhaul. I counted 173 accounts of the study on Google. I have to say that many early accounts seemed to paraphrase a press release, without critical review.  I was immediately skeptical, thinking that the report by McKinsey & Co. might have been thrown out as a trial balloon, to see whether it would float. It sure sounded scary. The study’s second bullet point was even scarier: “Among employers with a high awareness of reform, the proportion increases to more than 50 percent, and upward of 60 percent will pursue some alternative to traditional ESI.”

I downloaded the study but I didn’t have time to review it in depth. If there are reasons I am grateful to Anthony Weiner, it is that interest in his behavior this week eclipsed the study, which, it turns out, it pretty questionable. Also, he has been a strong advocate for progressive health reform.

I have to say that the claim seemed counterintuitive to me at the gate, as a ploy by the Republicans to build momentum against health reform.

Dissecting the McKinsey Study

It turns out that Swampland’s Kate Pickert went right to McKinsey, trying to better understand the study. Pickert was unable to get McKinsey to respond to many important questions about methodology that would help determine the integrity of the study, including how the script used to educate employers about impacts of the Accountable Care Act, study sampling and bias, and whether the respondents were primed to say they would keep or drop coverage. She concludes that there are reasons for healthy skepticism.

Nancy-Ann DeParle on the White House blog also challenged the study, stating that “it contradicts at least three others predicting that reform will have a negligible effect on employer-sponsored health insurance.” DeParle discusses studies by the Rand Corporation, the Urban Institute, and Mercer, holding that “the McKinsey study is an outlier.” It’s worth a read.

And it is really worthwhile not to take everything you read at face value. It is work, but you have to consider who is issuing a study, whether special interests are at play, and just how transparent are the study methods.

I have to say I was unimpressed by this effort to scare Americans about health reform. What about you?

On DES 40th Anniversary, Reflections
From A DES Daughter and Genetics Author

Join me in welcoming guest blogger, Ricki Lewis, a long-time science writer/textbook author /geneticist /professor since circa 1980. Her narrative nonfiction book, “The Forever Fix: Gene Therapy and the Boy Who Saved It,” will be published by St. Martin’s Press in early 2012.

This post  appeared on Ricki Lewis’ blog, GeneticLinkage, with the headline: I Was A DES Daughter.

Early June marks the 30th anniversary of the reporting of the first AIDS cases, but it’s also an older medical anniversary – recognition that the drug diethylstilbestrol (DES) derailed development of the reproductive systems of a huge cohort of fetuses. I was one.

My mom, like millions of others, was handed “a vitamin” while pregnant with me in 1954, which in those days of medical paternalism, she never questioned. And so when I became a teenager, I began to drip, and was hauled off to the gyno. The verdict: Adenosis. The label: DES daughter. It was scary.

As an endocrine disruptor before the term was coined, DES, among other things, played havoc with the boundaries between tissues of the cervix, which prevented glands from vanishing on schedule. With the hormonal onslaught of adolescence, the errant glands went into overdrive. Fortunately, I didn’t have the otherwise rare cancer whose sudden appearance led to identifying the problem, as with AIDS. I also escaped the trademark DES small uterus, and my husband, a DES son, escaped XY-related problems. But my mom did die of breast cancer – another legacy of the “vitamin” thought to protect against pregnancy loss. And so far the DES Follow-up Study on the third generation – my three daughters – has revealed only a slight increase in ovarian cancer risk that is likely a statistical fluke awaiting larger numbers.

Pregnancy paternalism took years to dissipate. In 1981, my ob clearly knew something was amiss, but he said nothing. And so we were shocked at the on-time birth of daughter #1, who weighed less than the scraggliest chicken at the supermarket.

Then in the middle ’80s I began providing genetic counseling at CareNet Medical Group in Schenectady, NY, founded by a wonderful ob/gyn, Hong Kyu Cheon, whose mother had been a midwife in Korea. When he retired, he handed the practice over to his daughter and daughter-in-law. Today CareNet is run by women. It’s not that an XY ob/gyn can’t be competent or caring, but there is something comforting, given what happened to my mother, about a woman-run practice.

And how things have changed! Patients now come into doctors’ offices already very informed, even naming specific drugs thanks to all the TV ads. My genetic counseling patients come armed with printouts describing their risks and possible tests, and sometimes even direct-to-consumer genetic test results. It is hard to imagine my mother’s time, when she was expected to happily take anything the white-coated authority figure handed out.


Top Patient POV Posts in First 2 Months

I started Patient POV on March 29th and I have been meaning to take a look back at posts that got people thinking about healthcare, about reporting on health, and what ideas are worth considering for the healthcare system to move closer to providing the elements of care that matter most to patients.

Here’s my list of the top posts  that engaged readers and people on social media the most:

Writing About Alzheimer’s and Dementia Gets Complicated
I attended a National Press Foundation fellowship program on Alzheimer’s Disease: Issues in 2011. Advocates put Alzheimer’s forward as “the coming tsunami in medicine.” Tsunamis overpower: there needs to be attention to how to write about Alzheimer’s for the public’s good. If it is one part of the post that is wearing, it is my longwinded raising of questions. If I had more time, I would have tempered that stylistically, but I hope the takeaway questions are seriously considered.

How One Man Faced a Prostate Cancer Diagnosis
I wanted to write an article about a man who chose active surveillance, which is ongoing monitoring to see whether prostate markers change, rather than “definitive treatment.” I was especially interested in this topic because of current controversies over prostate cancer screening, namely that many prostate cancers detected in asymptomatic men through PSA tests, do not become clinically significant. This raises the issue of potential overdiagnosis and overtreatment. There is no consensus of opinion over which prostate cancers can be safely left untreated, but the discussion is gaining steam, and it will be addressed at the National Institutes of Health later this year. In many countries, active surveillance is far more accepted by health authorities, doctors, and patients. It is a complicated issue: it is certainly not a good idea for many men, but it needs to be discussed more openly, and men and their significant others deserve to weigh the science and act on their preferences.

What the Macular Degeneration Drug Trial Means
First-year results from the National Eye Institutes CATT trial testing Avastin versus Lucentis for the wet form of age-related macular degeneration (AMD) proved to be of great interest to readers. The trial has one more year to go. I tried to break down issues that were not clear cut in other articles and get people thinking about the utility of a clinical trial in their lives.

On Disclosure, Transparency, and Firewalls: A Call for Uniform Standards
I have had major concerns about how to work with healthcare advocacy organizations in writing this blog. My preference is to speak with people who have their own opinions about their experiences in the healthcare system. Advocacy organizations obviously are another rich data source, but I think that if advocates viewpoints are discussed on Patient POV, we should know whether advocates represent a company, hold stock in an innovative patient-related product, receive dollars from industry, or the like. In other words, since money talks, let’s hold all to a universal standard of disclosure.

Social Media Weekend and Blogging on Patient POV
Sree Sreenivasam, a diverse group of panels, and volunteers made this happen at Columbia J-School for in New York. It was great to hear Andy Carvin (@carvin) speak about “no audience,” pitching that successful social media and blogging treats readers as experts, equals, and requires not talking down, or claims to represent readers. This is especially important in blogging here: I don’t portend to represent any patients.

Is There An Oncologist in the House?
This is a true story of a patient with lung cancer in search of an oncologist to follow him in a big northeastern city. The story puts the spotlight on a growing problem: a shortage of oncologists in the community and probable flight of oncologists to industry and more lucrative/less hassle opportunities. How will we come to grips with this in our society.

Planning Orthopedic Surgery: Ask Ahead About Aftercare
Two women, one on the east coast, the other on the west coast, who had multiple orthopedic surgeries. They had no aftercare, no clear way to discuss post-discharge questions with anyone on record. The American College of Orthopaedics did not get back to me regarding aftercare guidelines. If orthopedists think of aftercare, it seems to be limited to the immediate post-op setting and liability, but its hardly focused on the kinds of questions patients have.

It’s A Sign III – Deaf Access to Healthcare, by Billie Noakes
Guest blogger Billie Noakes writes about taking her deaf friend to the hospital, where over a five-day-stay, she sees an interpreter once. She is discharged with shingles pain, “which none of the expensive tests that she had” could point to. The story raises the issue that the deaf patient, not the hospital, should decide, when an interpreter is needed. In her friend’s case, medical errors were made because nobody understood what was going on. She simply had no clear way to communicate. Laws should really be changed to give the deaf more authority in requesting and obtaining an interpreter.

On Mother’s Day, Invest in Maternal Health
Mother’s Day is often a Hallmark moment, but this year, women are well aware of setbacks in women’s and maternal health, both in the United States and around the world. Maternal death statistics are not good for women living in poverty, for minority women, and in developing countries. This post is a call for action to ratchet up infrastructure to improve health outcomes for mothers and women.

Since I just finished 32 straight days of blogging last week, I thought this was a good time to take a look back. I am very interested in your ideas.

Please feel free to run an idea by me. I am especially interested in stories that NEED to be told, that can help to move the healthcare system forward, spurring happier patients with better outcomes.

You can suggest a story to me via patientpov “at” gmail “dot” com or follow me on twitter at lauranewmanny. To read some of my recent thoughts on the matter, see my post on May 29th.

LGBT Healthcare: Out of the Closet in New York

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Credit: To Treat Me, You Have to Know Who I am, National LGBT Cancer Network, NY

LGBT healthcare took a giant step forwards in New York City last week, with the announcement that New York City’s Health and Hospitals Corporation (HHC), AKA the City’s public hospital system of 11 hospitals, community health centers, and rehabilitation centers, will immediately adopt a program devoted to providing respectful, patient-centered, and culturally competent care to thousands of lesbian, gay, bisexual, and transgender patients. Working with the National LGBT Cancer Network, all of HHC’s 39,000 staff will be required to go through training that would sensitize employees to medical conditions and risk factors, which may be more common based on the gender identity or sexual orientation of the patient.

Liz Margolies, founder of the National LGBT Cancer Network, says that “previous negative experience in the health care system means that many LGBT people avoid coming in for needed health care tests and care. We want to right this wrong right out of the box.” According to Margolies, one in five transgender people are turned away from healthcare facilities. They need similar safe and welcoming care.”

LGBTpeople do not require specialized attention, but risk factor differences include higher rates of alcohol, tobacco, and drugs from an early age. “Medical providers need to be made aware of these risks and be sensitive to the fears of discrimination that prevent LGBT people from even attempting to get care,” said Margolies.

HHC President Alan Aviles, said that each employee would participate in a 15-minute orientation before they work in the system. Department will have more detailed, 1-hour train-the-trainer sessions.

Visitation, Research Needs of LGBT People Recognized

The announcement follows other gains in putting LGBT healthcare needs up front across the United States. In April 2010, President Obama extended hospital visitation and participation in medical decision making to LGBT partners.

Release of an Institute of Medicine Report on the Health of LGBT People at the end of March put the spotlight on the critical need to reach out, incorporate, and study LGBT people in healthcare research. As the report states: “researchers need more data about the demographics of these populations, improved methods for collecting and analyzing data, and an increased participation of sexual and gender minorities in research.”

Margolies said that since the video was released, other hospitals have contacted her, aiming to use it to develop programs, similar to HHC’s.  People expect that the Joint Commission on Accreditation of Health Care Organizations (JCAHO) will soon put standards in place to demonstrate that they are sensitive to the cultural needs of gay, lesbian, bisexual, and transgender people.

“It’s not necessarily outright bigotry, but widespread and pervasive ignorance on the part of medical staff on how to recognize and treat diverse patients,” said Margolies. “If we don’t educate them, who will?”