Data Today, Better Tomorrow, yay!

Women's Health Initiative

Some of us are suckers for studies: clinical trials, focus groups, surveys – whatever promises to shed a little light on the human condition, or possibly make that condition a little better.

This writer is a hopeless volunteer.

I have had my knees examined by MRIs, perhaps studying why I still have the originals despite a long history of abuse. I have had blood drawn for a study of celiac disease by someone who came to the house as part of the deal but unfortunately was not trained to find veins without causing excruciating pain. I have filled out lengthy surveys about addictive behavior – which may include addiction to study-participation (though that was not among the category choices.)

Currently, I am proudest of being an original part of the Women’s Health Initiative, which launched in 1993 with more than 160,000 postmenopausal women including this writer. In 1993 this was a Very Big Deal: studies had been made for all sorts of things with all sorts of participants, but finally there was a study of WOMEN. It sought to discover links between cancer (imagine! Studying women and cancer!) medical protocols, diet and other factors. Being a congenital wimp, and knowing I wouldn’t change my diet or stick to other proscribed regimens, I just signed up for the control group… but still. Even we control groupies are useful.

Over the years, WHI has developed a huge amount of useful data, probably the most beneficial being the finding that (imagine! Studying women!) hormone replacement therapy was not the be-all and end-all we had originally thought, but actually not such a good idea. (Read all about it.)

WHI has published over a thousand articles, approved well over 300 ancillary studies, and twice conducted extension studies. Findings have been about links between age, daily activities, diet etc and things like body fat, omega oils, heart disease, endometrial cancer – there is a list of useful discoveries resulting from this one large and ever-growing study project that boggles the mind.

Some – though surely not all – of this data is collected through regular survey forms received every year by WHI participants in addition to the annual birthday cards that by now this writer accepts as a “Congratulations! Are you’re still alive?” greeting. They seek data about lifestyles and life changes along with the traditional general health issues – and sometimes make one wonder what the next findings may be. My personal favorite question was, “When you enter a room full of people, do you often imagine they are talking about you?”

Paranoia after mastectomy? Who knows.

It is fascinating to be on the questioning end of tomorrow’s answers. Next blog: The Brain Health Registry. Assuming my closely-watched brain is still functioning.

WHI: Strengthening Women’s Health

WHICould the health and wellbeing of a few million women be improved, and a few billion dollars saved in the process? A very big dream.

When the Women’s Health Initiative was established more than 20 years ago, no one was talking in grandiose terms and few would have anticipated the wide-ranging health benefits (and huge cost savings) that would result in the decades ahead. Many of us were simply saying, “Imagine this. At last we’re studying women to find answers about women’s health issues.”

This writer was proud and happy to enlist in the first WHI study. I joined more than 100,000 other postmenopausal women volunteering to fill out forms, have blood drawn and answer questions over the next 15 years. That initial focus was on tracking the effects of hormone therapy, dietary patterns and/or calcium/vitamin D supplements on prevention of heart disease, cancer and osteoporotic fractures. I had not yet had breast cancer – that would come about 10 years into the study; a family history of osteoporosis added to my personal interest in WHI. Over the years I volunteered to participate in some of the wide-ranging ancillary studies looking at other health-related things like physical activities, lifestyle, tobacco and dozens of peripheral issues. (My personal favorite question appeared on one of the multi-page annual update forms. It read – Yes or No – “When you enter a room full of other people, do you have the feeling they are talking about you?” There may someday be a report on women and paranoia.)

Mysterious questions aside, WHI is serious business. Here, excerpted from the latest Extension Study newsletter are a few facts about what has been learned from the historic initiative, and a little of what is still ahead.

Those hormones millions of postmenopausal women were taking, widely thought to be miracle answers? Studies showed the risks far outweighed the benefits, and millions stopped taking them. Hormones in different combinations had been commonly taken to minimize chances of cardiovascular disease, cancers, fractures, diabetes, gall bladder disease and a variety of quality-of-life measures; quitting the hormones proved a better choice. Health benefits can’t be precisely measured, but the reduction in hormone use has led to a decrease in rates of breast cancer and cardiovascular disease.

And in dollars and cents? Some $37.1 billion, (in 2012 when all costs and quality-adjusted years of life are considered, has been the total economic return of the WHI trial.

By June, 2014, over 1000 papers based on WHI data had been published in scientific journals. What’s ahead? Researchers are looking at pet ownership and risk of cardiovascular disease; physical activity during childhood and risk of Alzheimer’s disease; breast cancer distribution by rural/urban areas and geographic differences in cognitive decline/dementia.

Every year on their birthday, WHI study participants receive a card – some of us call it the “Hooray, you’re still alive” card. For women everywhere, it represents something worth more than gold.

Can we talk? Can we afford not to?

Family Planning changes lives
Family Planning changes lives (Photo credit: The White Ribbon Alliance for Safe Motherhood)

A thoughtful reader named Lydia left a comment in response to my blog (just below) giving thanks for Mark Ruffalo and his support for reproductive rights. If you’re not into reading comments, here is Lydia’s in full:

So, are you saying that killing your unborn child was a better option than allowing the child to live-maybe to be welcomed into another family’s life, and your secrecy was better than taking action to hold the rapist accountable for what he did? I have had an unwanted pregnancy, too, and as horrified and hopeless as I felt, I allowed my child to live and I have no regrets. Abortion is never the right choice, but I know it sometimes feels like the only choice. That is why women need to pick up the phone and call a crisis pregnancy counselor. Abortion is like suicide. It is a permanent solution to a temporary problem.

If we’re going to talk, we have to listen. In trying to listen to Lydia I hear a couple of points of similarity and/or agreement. She and I each struggled with how to deal with an unwanted pregnancy (hers I suspect much later than mine in 1956.) We both appreciate strong & welcoming families. We both believe women need access to a pregnancy center which might offer help. Maybe we can build on these points. And try to work through some disagreements.

We need to set aside the business of holding the rapist accountable, at least in my case. In 1956, workplace rape was without recourse. I would have been laughed out of town — after destroying the fabric of several families, probably not including his. Today, women often fail to prosecute acquaintances who don’t hear No. Should they be required to prosecute, to relive painful experiences in the name of public justice? I’m not sure. Perhaps they deserve the right to make that decision for themselves, with legal advice if they choose and with the support of loved ones. Should they be required to carry the fetus that results from a painful experience for nine months in hopes that it might — might — be welcomed into another family? I don’t think so. I think they should have the right to choose otherwise, with the support of physicians and loved ones. I think no two such experiences are identical, so blanket dictates seem unwise.

Neither Lydia nor I have regrets about the course of action we chose. We differ on definitions. Lydia equates fetus with child, presumably because she believes life begins at conception. I respect the religions that teach this doctrine. I strongly support their right to protect the life of any fetus they happen to have, wanted or not. I just do not share the same belief about life’s beginnings. My own deeply held Christian beliefs see the beginning of life somewhat later on. But I think neither my religion nor Lydia’s has the right to tell other women — Jews, Muslims, Buddhists or nonbelievers — what they may or may not do with their bodies.

Lydia sees abortion as never the right choice. I see it as complex and personal, but sometimes the right choice. Mother Nature often sees it as the right choice when miscarriage happens. No one but the woman herself can know about her fetus, her body, her circumstances, her life, so I think it’s improper for me to presume to tell her what she must do. Often, counseling can help.

Which brings us to the crisis pregnancy center. Despite the fact that women have reported hearing untruths and accusations at crisis pregnancy centers, I believe many of them offer compassionate counseling and useful information. My greatly beloved daughter-in-law works at a pregnancy crisis center, and I know my daughter-in-law to be honest, kind-hearted and truthful. I support the right of pregnancy crisis centers to thrive and prosper although I do not support their promotion of unscientific theories. If we can talk, can we consider the possibility that pregnancy crisis centers might coexist with regular reproductive health centers? The latter, after all, offer many, many services unavailable elsewhere: information and testing about STDs; contraception and family planning services; pregnancy testing and counseling — even, in some of them, abortion. In that latter case, abortion is nearly always a tiny percentage of total services. Where they are being driven out of business, all of those services disappear and the results are tragic for countless men, women, boys and girls.

I can absolutely guarantee that when abortion is unavailable women suffer and die. I don’t think those on either side want women to suffer and die. Those on both sides want healthy women, few-as-possible abortions, healthy families.

What do you think, Lydia, is there any hope for conversation?

Doctors oppose abortion cuts in health bill

The San Francisco Medical Society has come out in opposition to removal of abortion coverage in the health reform bill, pointing out the potential danger to women’s lives if they are denied access to such care. Charles Wibbelsman, MD, President of SFMS, writes in today’s San Francisco Chronicle that the board of directors will urge congressional representatives to find a compromise.

It is a shame that such a complex issue as health care reform has been hijacked in the form of the Stupak amendment, which would ban all public funding for abortion (“Amendment to House bill reignites abortion debate,” Nov. 10).

Experience has shown that denying coverage of abortion does not stop or even curtail it, but rather shifts the costs elsewhere, and threatens to delay a woman in seeking and obtaining this medical procedure, thus potentially endangering her.

The San Francisco Medical Society’s board of directors has voted to urge our elected officials, particularly Sens. Dianne Feinstein and Barbara Boxer, to find a compromise that will not ban such funding and keep women with unwanted pregnancies safe.

Women’s lives should not be held hostage to politics.

At last, a ray of sanity from the medical community. I, for one, am proud of SFMS for standing up for the uncounted thousands of women, most of them poor and disadvantaged, who will suffer harm from denial of access to care should the conservatives and the U.S. Conference of Catholic Bishops win the day on this matter.

via Stupak amendment hijacks health care reform.