Many thanks to our speakers, Phyllis Greenberger, Dr. James Simon, and Susan Wysocki, and to Disruptive Women’s Wendy Grossman for the following summary post.

Our panel this morning discussed the issues surrounding how the WHI results were interpreted and communicated to women and their health care providers. We recognize that hormones are not appropriate for all women, and look forward to hosting a future panel that highlights alternatives.

The speakers have a variety of backgrounds and experiences (and genders), and we aim to promote diversity of voices.

This was not normal breakfast conversation.

Today was a jolting – and disruptive – talk about what happens to women’s bodies when they age. (Who knew that if you’re menopausal and you don’t take your hormones, your vagina can literally dry up and shrink?)

The second in Disruptive Women’s 2010 breakfast series, today’s talk was titled, “News (Hot) Flash: Sex, Drugs & Menopause.” The breakfast at Johnny’s Half Shell, was sponsored by Medco – and we’re happy to say there were two men in the audience this month – double last time.

The breakfast started with a screening of trailer for the upcoming movie Hot Flash Havoc. (Think: Michael Moore tackles menopause.)

“It’s not available in theaters yet – but it will be,” said Disruptive Women’s Robin Strongin, introducing the film.

I’m genuinely sad that the documentary isn’t being released until October-ish. Normally, I don’t want to watch anything at 7:30 in the morning, but the little bit that was shown was so funny I can’t wait to see the whole thing. (Seriously, put it on your Netflix queue now.)

Introducing the speakers, Strongin briefly summed up a woman’s life cycle. “You start out life in this estrogen gel – like a gefilte fish,” she said. “Then you hit puberty, you’re either fertile or you’re not, then you’re pre-menopausal, then menopausal, then post-menopausal. Then you die.”

The talk today focused on the menopausal portion of the life cycle. Phyllis Greenberger, President and CEO of the Society for Women’s Health Research, started off speaking about the Women’s Health Initiative. “There was a lot of misinterpretation, some of the results reported were incorrect,” she said.

She quickly explained what they did, what was wrong, and what’s true today. The Women’s Health Initiative was a giant study of postmenopausal women, testing whether hormone replacement therapy could help prevent cardiovascular disease, cancer, and osteoporosis. The results were different for different age groups – women starting hormone therapy in their 70s had generally bad outcomes (increased risk of heart attack, breast cancer, stroke, etc.), while women starting in their 50s had generally good outcomes. But the results widely reported were the negative ones from older participants – so many women never heard about the rest of the research, or anything we’ve learned since!

The next speaker was Dr. James Simon, a clinical professor of obstetrics and gynecology at the George Washington School of Medicine – and a menopause researcher. (But he will forever be remembered to me as the man who scared the crap out of me about the future health and wellness of my vagina. I may not sleep tonight.)

The Women’s Health Initiative’s results scared a lot of menopausal women into quitting their hormones cold turkey. That, is a very bad idea, he said. Going off hormones makes women unhappy and unpleasant, but more disturbing, he said, “when women go off their hormones their vaginas dry up and get smaller.”

(!)

Which makes sex painful – so women stop having it. And, he says, marriages today have enough problems without eliminating sex (or arguing about it).

“No one wants to have sex when it hurts…. You can’t have good sex with a dried-up vagina. That’s a fact,” he said. “I can give you a two-hour lecture on why the parts don’t work.”

Uhm, great. Go on.

Instead, he told a horrifying story about one of his 55-year-old patients – a prominent writer for the Washington Post, who came to his office for her annual healthy woman exam. He asked her how she was feeling, how were things with her husband, how’s their sex life? Good, good, good, she said. Everything was fine.

Then she put her feet in the stirrups.

“I couldn’t even put the speculum in because it’s too shrunk and dry and small,” he said. “I could barely fit a pencil.”

(I have heard stories about women “drying up” and that if you don’t use it you lose it – but I thought that was just, well, talk. I didn’t think it was true.)

He asked her if she was having sex.

She was silent.

Then she started crying. “She cried and cried,” he said.

Painful dried up vaginas aren’t something a lot of women talk about. “It’s grin and bear it, tough it out, or give it up,” he says.

But, being an honorary Disruptive Woman – he laid it on the table.

And Susan Wysocki, president and CEO of the National Association of Nurse Practitioners in Women’s Health pointed out more menopause-related things a lot of young women don’t know – or talk about. Like, who knew some menopausal women off their hormones are in so much pain they can’t ride an exercise bike, or even comfortably sit down.

“Here we are,” she said, “saving at least one vagina at a time.”

She also discussed the fact that some women worry about taking hormones because they don’t want to get breast cancer. She says that sometimes a woman may have a teeny tiny potential tumor that could go un-noticed for years. But, sometimes the hormones can make it grow big enough to show up on a mammogram. And that way a woman can get treatment faster.

“That can be a good thing,” she said.

For more about menopause, hormone replacement, and the WHI study, you can read:

• Women’s Health Initiative site, National Institutes of Health
• “A Fresh Look at Post-Menopausal Hormone Therapy: Benefits and Risks,” Society for Women’s Health Research, January 2010 (updated April 28, 2010)
• “The Estrogen Dilemma,” New York Times Magazine, April 12, 2010
• Hot Flash Havoc movie site

Don’t miss the next Disruptive Women in Healthcare breakfast, “Childhood Obesity: A Big Fat National Challenge.” May 27 at Johnny’s Half Shell. Reserve your spot now!

The following post by Dr. Agnes Binagwaho, Permanent Secretary of the Ministry of Health of Rwanda, is part of Disruptive Women’s “The Value of Health: Creating Economic Security in the Developing World” series.

Dr. Binagwaho is a pediatrician specializing in emergency pediatrics, neonatology, and the treatment of HIV/AIDS in children and adults. She has served 4 years as Chair of the Rwandan Steering Committee for the United States President’s Emergency Plan for AIDS Relief (PEPFAR), and was responsible for the management of the World Bank MAP Project in Rwanda, while also serving on the country’s High Commission on Aid Policy.

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A few days ago the world celebrated Mental Health Day, and more recently it was the Human Rights Day, as such I have decided to post a reflection on the rights of all people to access mental health care as a part of the access to health care as a basic Human Right. I especially dedicate this reflection to the issues surrounding access to quality mental health care services for women.

Unfortunately, in the majority of the developing world, mental health is not an issue that is given adequate attention. However, if we take the definition of WHO, mental health plays as important part in overall health as the physical aspects do. To improve mental health, governments have to create a well-trained and well-equipped workforce to care for mental health and ensure that the funding and human and physical infrastructures are available. This will help to increase access to mental health care, but should be completed by making drugs available, like psychotropic drugs. Many of these medications are not so expensive and can be part of public essential drugs available at public health facilities. It is a matter of paying attention to the problem.

Also, the general population should be educated via mass media campaigns so that they will have less fear and a better understanding of mental health diseases and those who suffer from them, causing mental health patients to suffer from less isolation, stigma and discrimination. This can be done by partnering the government with civil society organizations to improve the public education on this issue through TV, radio, speeches, billboards and community events.

(more…)

As I mentioned in my post last week, Disruptive Women in Health Care is tackling the issue of drug adherence, often referred to as America’s other drug problem.  From a health policy standpoint, the issues cross financial, clinical, behavioral, and cultural boundaries.

Over the next two weeks, Disruptive Women and guest bloggers, all experts in their respective field–each representing a different perspective — patient, physician, nurse, pharmacist, researcher, behaviorist, policy analyst, distributor, to name a few–will share their analyses, opinions, and solutions.

At the completion of this series, we will compile an e-book as we did when we tackled the issue of Comparative Effectiveness Research.

THE SCOPE OF THE PROBLEM

A new report, Thinking Outside the Pillbox: A System-wide Approach to Improving Patient Medication Adherence for Chronic Disease, issued by the New England Healthcare Institute (NEHI) found that patients who do not take their medications as prescribed pay a price in poorer health, more frequent hospitalizations and a higher risk of death.

Collectively, noncompliant patients incur up to $290 billion annually in increased medical costs–that’s $290 billion in avoidable medical spending every year, according to the NEHI report.

This is not a new problem, nor is it unique to the US.  In 2003, the World Health Organization (WHO) issued a landmark report entitled Adherence to Long-Term Therapies in which it noted:

Adherence to therapies is a primary determinant of treatment success. Poor adherence attenuates optimum clinical benefits and therefore reduces the overall effectiveness of health systems.

“Medicines will not work if you do not take them.”  Medicines will not be effective if patients do not follow prescribed treatment, yet in developed countries only 50% of patients who suffer from chronic diseases adhere to treatment recommendations. In developing countries, when taken together with poor access to health care, lack of appropriate diagnosis and limited access to medicines, poor adherence is threatening to render futile any effort to tackle chronic conditions, such as diabetes, depression and HIV/AIDS.
This report is based on an exhaustive review of the published literature on the definitions, measurements, epidemiology, economics and interventions applied to nine chronic conditions and their risk factors. These are asthma, cancer (palliative care), depression, diabetes, epilepsy, HIV/AIDS, hypertension, tobacco smoking and tuberculosis.

In the intervening years since the WHO issued its report, adherence has become more problematic.  Numerous reports highlight the ongoing challenges, which are especially critical in the mental health arena.

A study in the American Journal of Psychiatry found that close to 60% of schizophrenics who were prescribed anti-psychotic drugs did not take the medication as prescribed by their physicians.  “We looked at adherence to anti-psychotic medication because they form the backbone of treatment for schizophrenics,” said Dr. Dilip Jesete, co-author of the study.  “These medications are good, but only work when taken properly.”

The study found that psychiatric hospitalizations were higher for people who did not take their medication as prescribed.

When schizophrenics, a disease which affects over 2 million Americans, do not take their medication, they are at risk for dying by suicide.  Four out of ten people who suffer from schizophrenia attempt suicide and one in ten die by suicide.

SOLUTIONS

Despite the complexity of adherence related challenges, a number of promising solutions, innovative responses and well-researched efforts are underway.  Many of these will be described in greater detail in our Drug Adherence series.

Some of these include:

• Text message alerts to remind patients
• Greater use of health care teams
• Integration of health information technology
• Creation of online and offline medication management systems, reminders
• Health e-games
• Insurance reforms
• Public awareness campaigns
• Patient education
• Mobile phone applications
• Research in gender-based barriers

We look forward to your comments and input as we shed light on this critical policy issue.

This past New Year’s Eve I was at a dinner party and had my eyes opened wide. After the typical pleasantries of the evening, with the kids all squished onto the couch in the family room patiently waiting for the musical performances to begin on TV, the adults remained at the dinner table engrossed in what became an emotional and heart wrenching discussion about parental anguish and choices when their child(ren) face possible mental illness. I heard how difficult it can be to navigate the fine line between the health care and educational systems and bureaucracies. I heard stories about the information void that parents face once decisions are made to bring their (minor) child(ren) for mental health treatment and/or diagnosis. I learned about the disparate and sometimes utterly contradictory interpretations of HIPAA guidelines by schools and health care entities. I heard how 24/7 supervision may not prevent an adolescent from trying to harm himself. And I heard how parents quit their jobs or took leaves of absences from work to deal with the never ending piles of paperwork, court appearances and legal proceedings to seek and ultimately obtain the best care, education, and treatment for their kids. I realized that there are indeed complexities and gaps in these systems that need attention. And I reflected that I felt unable to help figure out how to make their circumstances better. And we hugged and cried and prayed that 2009 would be better.