The ACLU has taken an interest in gene patents, which allow human genetic sequences and gene tests to be patented, expressing concern that “While the purpose of the patent system is to encourage innovation, the high licensing and diagnostic testing fees that some biotech companies charge for use of ‘their’ genes are inhibiting biomedical research and interfering with patient care.”
Although somewhat technical, this Human Genome Project Information page from the Oak Ridge National Laboratory provides an overview of the topic, including some of the arguments for and against gene patenting, with lots of links to related information.
A freely available article from Nature Reviews Genetics, Patenting human genetic material: refocusing the debate, also provides good background reading on this issue, including a discussion of concerns about patenting from “adversely affecting the research environment to hampering the distribution of useful technologies.” A number of other articles on this topic are also freely available through PubMed Central.
The ACLU is specifically focused on patents related to the BRCA1 and BRCA2 genes relevant to breast and ovarian cancer, explaining that:
“…the Utah-based company Myriad Genetics has patented two genes – BRCA1 and BRCA2 – and certain mutations along these genes that have been associated with an increased risk of certain forms of breast and ovarian cancer. The high licensing and diagnostic testing fees charged by Myriad have forced some researchers to discontinue research on breast cancer and have prevented women from having access to screening for mutations.”
The organization is currently conducting a survey to gather information on women’s experiences with BRCA testing:
We are interested in hearing from you if you have been advised to get the BRCA genetic test and fall into one of the following categories:
1) You were tested, and had problems with or concerns about the testing process (for example, your results were uncertain or incorrect, or you were advised you needed to be tested a second time); or
2) You were tested, and want to be tested again through another lab for verification; or
3) You wanted to be tested, but had financial problems getting the test (for example, you could not afford it or your insurance did not cover it); or
4) You want to determine the BRCA status of a deceased relative.
If your answer is YES to even one of these questions, please take the ACLU’s survey: www.aclu.org/brcasurvey. The ACLU is looking into the legality of patenting human genes, including the BRCA1 and BRCA2 genes, and the effects of gene patenting on research and testing.
The issue has become more urgent as more women are showing an interest in egg donation as a way to make ends meet. Some fertility clinics say that the number of applicants has increased as much as 55 percent in the past four months compared to the same period last year.
Catherine Elton writes:
Doctors say there is no biological reason that donating eggs would cause infertility, but they also cannot say for sure that it doesn’t. The long-term health effects of egg donation have never actually been studied, in large part because the high cost of studies doesn’t “seem justified in terms of what the possible risks [of the procedure] might be,” according to Sean Tipton, spokesman for the American Society for Reproductive Medicine (ASRM). He points out that egg donors undergo the same drug treatment as IVF patients — hormone injections and other drugs that stimulate follicles, promote egg maturation and prevent the release of eggs before they can be retrieved — and that studies of the latter population show it is safe.
But some women’s health advocates say that evidence isn’t strong enough, calling for further study and a national, trackable registry of egg donors. While the Centers for Disease Control and Prevention (CDC) logs the number of donated eggs transferred to infertile women each year — there were some 15,500 in 2006, the most recent year for which data are available — no one knows how many individual donors those eggs came from, who they were or whether they were exceeding industry guidelines of six donations in a lifetime. (The guidelines are intended to limit the number of offspring from a particular donor and to prevent overexposure to fertility drugs, but they are not based on scientific data.)
“Right now egg donors are treated like vendors, not as patients. Patients need to be followed up,” says internist Jennifer Schneider, who has been advocating for the government to track egg donors since 2007, a few years after her daughter, a three-time egg donor, died of colon cancer at age 31. “After the first few days of being discharged from the IVF clinic and seeing that there were no immediate consequences, they are never contacted again.”
Short-term risks include ovarian hyperstimulation syndrome, ovarian torsion or ruptured ovarian cysts. Our Bodies Ourselves Executive Director Judy Norsigian, who also supports a national registry of egg donors, tells Time that women she speaks to on college campuses are generally uninformed about the risks. Elton writes:
A recent study of past donors seems to support Norsigian’s impressions. In an article published in Fertility and Sterility in November 2008, researchers found, for example, that 34% of former egg donors didn’t recall being aware at the time of donation of the risk of ovarian hyperstimulation syndrome, the most common side effect. The majority of donors experience at least the mild or moderate form of this syndrome, which involves discomfort, bloating or nausea and usually resolves itself on its own. The severe version of this syndrome is rare — only 100 to 200 for every 100,000 women — but its consequences can include kidney failure and death. And then there are other side effects, such as bleeding, infection and death, which are associated with any surgery performed under general anesthesia. But fully 20% of the 80 donors interviewed said they didn’t know there were any physical risks to egg donation at all.
“There is a clear problem about informed consent here,” Norsigian says.
It’s a comprehensive story that raises a number of important issues — please share it.
Last year, a measure passed that requires researchers who receive federal funding from the National Institutes of Health to abide by a public access policy and make their research papers available through PubMed Central, a free online archive of life and biomedical science journal literature.
As a result, much more literature medical research is expected to become available to the public (although much of it will become available only after 12 months have passed since publication). Librarians and consumer advocates have been among the champions of this policy because it will increase access to scientific and medical knowledge.
Last week, it was announced that this policy of access no longer needs to be renewed every year, making it more likely to succeed in providing the public with access to medical research funded by their tax dollars. Supporters of the policy, however, are currently fighting a legislative challenge from Rep. John Conyers (D-MI); it has been suggested that his and others’ opposition the public access policy may be related to political donations received from the publishing industry.
In addition to the individual articles to be made available through the public access policy, a number of journals are already available in full online as “open access” journals — journals which are freely available to the public “without financial or other barrier other than access to the internet itself.” In other words, you or your library do not need to pay for a subscription to access these titles.
For more information on open access publishing (which is distinct from the NIH public access policy), check out this introduction and the fairly detailed Wikipedia entry.
Obama’s Feminist Mystique: What a week for women in the new adminstration. President Obama named Melanie Verveer, chair and CEO of the Vital Voices Global Partnership for emerging women leaders, to a newly created State Department position: special ambassador for global women’s issues. Veveer was once Hillary Clinton’s White House chief of staff.
Then on Wednesday Obama signed an executive order creating a White House Council on Women and Girls. (Read about the event through the eyes of basketball star Lisa Leslie.) Lynn Sweet has photos and a full list of the attendees.
The council will be led by longtime Obama adviser Valerie Jarrett, who talked with NPR’s Linda Wertheimer about what the group will focus on. Director of Public Liaison Tina Tchen will oversee day-to-day operations.
Its mission, according to the White House memo, is to “provide a coordinated federal response to the challenges confronted by women and girls to ensure that all Cabinet and Cabinet-level agencies consider how their policies and programs impact women and families.”
In his remarks, Obama emphasized that women are not the only ones hurt by gender inequality:
“These issues are not just women’s issues. When women make less than men for the same work, it hurts families who find themselves with less income, and have to work harder just to get by. When a job doesn’t offer family leave, that also hurts men who want to help care for a new baby or an ailing parent. When there’s no affordable child care, that hurts children who wind up in second-rate care, or spending afternoons alone in front of the television set. And when any of our citizens cannot fulfill their potential because of factors that have nothing to do with their talent, their character, their work ethic, that says something about the state of our democracy.”
New York Times columnist Nicholas Kristof summed up the powerful message that the White House is sending.
“For decades, the ‘serious’ foreign policy issues were the likes of non-proliferation or trade rules, but a new agenda is emerging and the treatment of women around the world is high on it,” writes Kristof.
“But this isn’t just a justice issue. It’s also a matter of economic development. One of the things we’ve learned over the last 15 years is that you can’t fight poverty effectively unless you educate, emancipate and empower women, and bring them into the formal economy. So, with these new positions, onward!”
New FDA Commissioner Named: Filling a key vacancy, Obama today said in his weekly radio address that he would nominate Margaret A. Hamburg, a physician and former New York City health commissioner, to lead the Food and Drug Administration. Joshua Sharfstein, Baltimore’s health commissioner, will serve as Hamburg’s chief deputy.
The address, which focused on food safety, confirmed Hamburg’s nomination, which was made public earlier this week.
“The pair, both outsiders, would take on an agency in crisis,” wrote Rob Stein and Lyndsey Layton in the Washington Post. “Shaken by a series of alarming failures, the FDA desperately needs an infusion of strong leadership, money, technology and personnel — and perhaps a major restructuring, say former officials, members of Congress, watchdog groups and various government reports.”
The dismal news continues:
The agency has been lambasted on Capitol Hill for a series of food-borne illnesses, the most recent of which is an ongoing salmonella illness outbreak that has sickened 700 people and killed nine. It has been slammed by its own scientists for approving medical devices without proper vetting. And it has been unable to ensure the safety of imported goods pouring into the United States from around the world, including food, drugs and raw materials.
Other than that, I’m sure things are just swell.
Plus: Over at the Wall Street Journal, Alicia Mundy has a good story about how political lobbying drove the FDA approval process of Menaflex, a medical device designed to treat a common knee injury. The story includes a paper trail of memos.
And here’s an interesting fact about Hamburg’s mother, Beatrix; She was the first African American woman to attend Vassar College and to earn a degree from the Yale University School of Medicine.
Spending Bill Passes; Includes Funding for Reproductive Health: Congress finally passed the 2009 omnibus spending bill this week. Michele Goldberg, writing at RH Reality Check, discusses the $50 million the bill includes for the United Nations Population Fund (UNFPA), which was de-funded under the Bush administration.
“Now that Democrats are running things, we’re seeing a return to reality-based policymaking on women’s health,” she writes, but warns that conservatives will continue to find ways to attack the UNFPA.
Jodi Jacobson has more analysis of the spending bill and its funding for domestic and international reproductive health programs.
Science Trumps Ideology: Last week we previewed Obama’s decision to overturn the Bush administration’s restrictions on stem cell research. But Obama went a step further on Monday, outlining how his administration would continue to value the expertise of science advisers. From The New York Times:
The document orders Mr. Obama’s top science adviser to help draft guidelines that will apply to every federal agency. Agencies will be expected to pick science advisers based on expertise, not political ideology, the memorandum said, and will offer whistle-blower protections to employees who expose the misuse or suppression of scientific information.
The idea, the president said in remarks before an audience of lawmakers, scientists, patients advocates and patients in the East Room, is to ensure that “we make scientific decisions based on facts, not ideology”: a line that drew more applause than any other. Irv Weissman, who directs an institute at Stanford University devoted to studying stem cells, called the declaration “of even greater importance” than the stem cell announcement itself.
After noting that “Congressional Democrats and scientists themselves issued report after report asserting that the White House had distorted or suppressed scientific information,” the Times turned to Bush political strategist Karl Rove and counselor Ed Gillespie to defend their boss and his supposedly rigorous application of science — which makes for a very subjective ending.
Take Action
*Email President Obama at president@whitehouse.gov or call the White House at 202-456-1111 and thank the president for his commitment to promoting sound science based on fact not ideology and for not letting religion be used as a barrier to access safe and effective drugs. (National Women’s Health Network)
Stem Cell Funding: “President Obama’s decision to lift restrictions on federal funding of human embryonic stem cell research, scheduled to be announced Monday, is expected to provide a major boost to one of the most promising but controversial fields of biomedical research in generations,” reports the Washington Post in what will be a page-one story on Saturday.
Congress Hits Spending Roadblock: Congress on Friday passed a stop-gap bill to keep the government running for another five days. The legislation was needed because Republicans on Thursday unexpectedly forced a postponement on a vote on the government’s so-called omnibus bill.
Jodi Jacobson covers the Republican attacks on sexual and reproductive health programs contained in the spending bill — such as the Affordable Birth Control Act, a correction to earlier legislation that is not an earmark (learnmore), and U.S. funding for the United Nations Population Fund.
“[F]or the far right, apparently no ideological position is too shallow and no misrepresentation too outrageous to prevent them from wreaking havoc on this country or to mitigate against their purely political shenanigans,” writes Jacobson.
Fortunately, Republican Sen. Roger Wicker’s amendment to limit UNFPA funding failed.
Fox News Misrepresents Provider Conscience Rule: This one is a doozy. From Media Matters:
In separate reports, Fox News’ Bret Baier and Megyn Kelly misrepresented the reported plans of the Obama administration to rescind a December 2008 Bush administration regulation to falsely assert that the Obama administration’s decision could result in doctors’ being prosecuted or discriminated against for refusing to perform abortions. In fact, federal law — which the Obama administration cannot “repeal[]” — prohibits public officials from requiring recipients of public funds to perform abortions or sterilizations in violation of their religious or moral beliefs.
Read more at Media Matters, along with our coverage of how some media outlets last week mis-characterized the Bush administration policy.
Plus: This is essential: Rachel explains how to comment on the rule to rescind the Bush rule. The 30-day public comment period starts on Tuesday.
“While the participants were extremely diverse, there was real, across-the-board consensus that the course we’re on right now is neither sustainable nor responsible, and that it’s not working for businesses, state governments, the federal government, individuals or families,” Debra Ness, president of the National Partnership for Women & Families, said in statement.
Over at Womenstake, the blog of the National Women’s Law Center, NWLC president Marcia Greenberger wrote: “What was striking was that a positive tone existed, not only in front of the cameras but in private conversations throughout the day. Wanting to read it tonight, one Republican member of the House asked me for my own copy of the Center’s report on the outrageous practice of many insurance companies to charge women more than men when they buy insurance directly — even with maternity coverage excluded!”
The New York Times notes that a “wide variety” of the speakers “expressed support for an individual obligation.”
Speakers who endorsed such a requirement included Representative John D. Dingell, Democrat of Michigan; Representative Jo Ann Emerson, Republican of Missouri; Kendall J. Powell, the chief executive of General Mills and a member of the Business Roundtable, which represents large companies; Representative Allyson Y. Schwartz, Democrat of Pennsylvania; and Scott P. Serota, the president of the Blue Cross and Blue Shield Association.
Ms. Emerson said it was essential to “get the entire population in an insurance pool and spread the risk.”
Likewise, Mr. Serota said, “an enforceable mandate is the cornerstone to getting everybody covered.” Health insurance will not work if people can buy it when they are sick and drop it when they are healthy, he said.
Richard J. Umbdenstock, the president of the American Hospital Association, said the word “mandate” seemed to alarm some people, so he suggested using a term like “responsibility.”
Insurance should be viewed as “a responsibility on every individual, every institution and every enterprise in our society,” Mr. Umbdenstock said.
Plus: Today’s “Morning Edition” on NPR looked at how Obama plans to pay for expanding health care coverage.
Health Forums Hit the Road: The White House will hold regional forums on health care in key states, but Obama probably won’t attend.
“The White House, in a statement, indicated that people from around the country — experts, health care professionals and providers as well as everyday citizens — would be invited to attend the sessions in these states: California, Iowa, Michigan, North Carolina and Vermont. The forums are to be held later this month and next, although no specific dates were announced,” writes Kate Phillips.
More Health Care Reform Suggestions: Democratic Sen. Max Baucus of Montana said this week he will introduce comprehensive health-care legislation in June, reports the Philadelphia Inquirer. Baucus is looking to introduce a bipartisan bill with Sen. Charles E. Grassley (R.-Iowa), and he hopes to get the support of 70 senators.
“We need to come up with a uniquely American solution, which is a combination of public and private,” Baucus said. “I think we’d be spending capital inefficiently to pursue single-payer. I think there should be choice, flexibility, in our reform package. This is not a single-pay country.”
And Another Thing: This isn’t directly health-related, but the fact that Obama suspended a Bush administration rule on endangered species is cool.
Action Items
Help Save Affordable Birth Control Last week regulations to restore affordable birth control were included in the 2009 Appropriations bill. This week, Sen. DeMint tried to strip affordable birth control from the bill, characterizing the Affordable Birth Control Provision as “an earmark for Planned Parenthood,” even though it is of no-cost to the government.Call your senators and encourage them keep in the Affordable Birth Control Provision. (Planned Parenthood)
Searching for Common Ground: Robert Pear of The New York Times reports on an apparent consensus emerging among key players in the health care debate:
Many of the parties, from big insurance companies to lobbyists for consumers, doctors, hospitals and pharmaceutical companies, are embracing the idea that comprehensive health care legislation should include a requirement that every American carry insurance.
While not all industry groups are in complete agreement, there is enough of a consensus, according to people who have attended the meetings, that they have begun to tackle the next steps: how to enforce the requirement for everyone to have health insurance; how to make insurance affordable to the uninsured; and whether to require employers to help buy coverage for their employees.
Health Care “Reform” is Not Enough: “Most current health care reform initiatives, including those of Barack Obama, focus on providing wider access to health insurance. They do little to address the underlying problems with our health care system,” writes Susan Yanow in On The Issues magazine. Yanow identifies the top five problem areas for women with our insurance-driven health system.
Plus: This list of 10 ways to spend less on health care during a recession is well-meaning, but the list assumes a level of privilege that leaves out millions. I keep thinking of this story from last week.
“Is Your Daughter Safe at Work?”: The PBS program NOW has collaborated with the Schuster Institute for Investigative Journalism at Brandeis University on an unprecedented broadcast investigation of teen sexual harassment in the workplace. Check your local PBS station schedule for air dates.
The NOW website has a terrific collection of useful links and resources, as does the Schuster Institute, including an interactive map with links to information about specific teen sexual harassment cases gone to court. Keep in mind the map reflects a tiny proportion of probable cases. Kudos to EJ Graff for kicking off this project with her article, “Is Your Daughter Safe at Work?,” published in Good Housekeeping in June 2007.
The Trouble With Repeat Cesareans: “Much ado has been made recently of women who choose to have cesareans, but little attention has been paid to the vast number of moms who are forced to have them,” writes Pamela Paul at Time magazine. “More than 9 out of 10 births following a C-section are now surgical deliveries, proving that ‘once a cesarean, always a cesarean’ — an axiom thought to be outmoded in the 1990s — is alive and kicking.” A good look at the VBAC-lash.
North Dakota House Passes Egg-as-Person Bill: “On Tuesday, one body of North Dakota’s state legislature voted, 51-41, not only to ban abortion, but to define life as beginning at conception. Such a measure, considered extreme even by pro-life standards, would have far-reaching consequences on women’s health,” writes Kay Steiger at RH Reality Check.
Understandably, Rachel Has Some Concerns …: About a proposed Tennessee bill that calls for testing some pregnant for alcohol and drugs.
Gone Daddy Gone: I couldn’t agree more with Creativity magazine editor Teressa Lezzi, who writes at AdAge.com:
After this year’s Super Bowl, I just couldn’t do it anymore. As it was, any time I had to log on to Go Daddy I felt some combination of embarrassment and annoyance at the registrar’s approach to women and marketing. But after its execrable ad efforts around this year’s game, I found that I just couldn’t stomach contributing anything to this organization any longer. I’m transferring my domains and my insignificant little piece of business elsewhere.
GoDaddy turned me off years ago because of its super lame ads, though I sometimes have to deal with the company for other clients. If sexist advertising isn’t reason enough to stay away, GoDaddy’s user interface sucks.
Cervical Cancer Vaccine Usage in California: A study by UCLA’s Center for Health Policy Research found that one in four teenage girls in California — about 378,000 out of 1.5 million — received at least one dose of the Gardasil vaccine in 2007, its first full year of distribution, reports the L.A. Times.
Truth Catches Up: Remember the eye-catching “truth” anti-smoking ads? Researchers at the Johns Hopkins Bloomberg School of Public Health and the American Legacy Foundation estimate that the nations’ largest youth smoking prevention campaign saved $1.9 billion or more in health care costs associated with tobacco use. The findings appear in the Feb. 12 online edition of the American Journal of Preventive Medicine. The American Legacy Foundation, which launched the ads in 2000, spent $324 million to implement and evaluate the truth campaign.
Plus: Cigarette-maker Philip Morris was ordered to pay $8 million in damages to the widow of a smoker who died of lung cancer in a case that could set the standard for 8,000 similar Florida lawsuits, reports NPR.
Obama Closer to Nominating HHS Secretary: Kansas Gov. Kathleen Sebelius appears to be President Obama’s leading choice for secretary of Health and Human Services. In a front-page story on Thursday, Peter Baker and Rober Pear of The New York Times write:
With his economic recovery plan signed into law, Mr. Obama plans to turn his attention more to health care next week with a fiscal blueprint that will begin to advance his ideas about covering the uninsured, advisers said. He may also make health care a theme of his prime-time address to a joint session of Congress on Tuesday night, they said.
It remained unclear whether the White House would finish vetting Ms. Sebelius in time to nominate her by next week. Advisers described her as “the leading candidate,” although they said other names were still in discussion and emphasized that no final decision had been made.
We previously noted Sebelius’ frontrunner status, along with other names reportedly under discussion. The Washington Post’s Al Kamen this week mentioned another would-be contender: “Obama transition chief John D. Podesta, whose name has been out there as perhaps most ready to handle the difficult job, has told co-workers and friends that he’s staying put at his think tank, the Center for American Progress. But he’s been observing that perhaps Bill Novelli, the outgoing head of AARP, the seniors lobby, might be a possible candidate.”
The More Things Change …: In that same column, Kamen notes that Obama’s first 56 selections for Senate-confirmed jobs reflect, well, the status quo — white men still rule, though they’re not quite the majority. At this early stage, 32 percent of the appointees are women.
By way of comparison on a few of these statistics, 39 of Bill Clinton‘s first 48 nominees (81 percent) were white and seven (15 percent) were African American; 75 percent were men. Of George W. Bush‘s 28 first nominees, 22 were white (79 percent) and only 14 percent were women, according to data compiled by the Presidential Transition Project at New York University’s Wagner School of Public Service.
It should be noted that this snapshot is of the Cabinet and topmost officials in the new administration and may change significantly over time. For example, the average age could be expected to drop a bit as lower-level positions — assistant secretaries and such — get filled, probably with a younger cohort of appointees.
Obama Signs Stimulus Bill: President Obama on Tuesday signed into law the $787-billion economic stimulus bill. Ann at Feministing looks at who’s getting stimulated — or, to be more specific, how will the law expand job opportunities for women?
Over at The New York Times, Robert Pear reports that the bill provides “substantial amounts of money for the federal government to compare the effectiveness of different treatments for the same illness.”
Under the legislation, researchers will receive $1.1 billion to compare drugs, medical devices, surgery and other ways of treating specific conditions. The bill creates a council of up to 15 federal employees to coordinate the research and to advise President Obama and Congress on how to spend the money.
The program responds to a growing concern that doctors have little or no solid evidence of the value of many treatments. Supporters of the research hope it will eventually save money by discouraging the use of costly, ineffective treatments.
Meanwhile, NPR reports on a new study that shows even head-to-head comparisons don’t provide easy answers.
Scientists Await Action on Stem Cells: Sure the economy has demanded a lot of attention, but some scientists are wondering when Obama is going to lift restrictions on stem cell research.
“Everyone is waiting with bated breath,” George Daley, a leading stem cell scientist at Children’s Hospital in Boston. tells the Washington Post. “We’re all waiting to breathe a huge sigh of relief.”
Know How to Fix Health Care?: If you have a plan — and if you’re an undergraduate or graduate student — Kaiser Family Foundation wants to hear from you. Below is your essay assignment — and unlike the last paper you wrote, this one could net you $1,000:
President Obama has stated that reforming the health care system is one of his top priorities, and there is broad interest from policymakers and the public in making a change. During the campaign, he outlined a framework for reforming health care. The essay should cover: what elements of his plan should be prioritized given the current economic crisis, what elements are most likely to garner support and which ones will be most challenging and why?
Action Alert * Ask Obama to End Abstinence-Only Funding
President Obama is putting together his proposed budget for 2010, and as he has assured the nation, he will be on the lookout for failed programs that deserve to be eliminated. We have an easy cut to suggest: End federal funding for the failed abstinence-only-until-marriage experiment. Email the White House (Chicago Foundation for Women)
The Barnard Center for Research on Women is sponsoring a day-long conference Saturday, Feb. 28, on ”The Politics of Reproduction: New Technologies of Life.” I wish I could get to New York — the topic and the questions raised couldn’t be more timely. Just look at today’s New York Times, which considers whether in vitro fertilization causes changes in gene expression or in developmental patterns — changes that may not be obvious at birth.
Here’s the conference description:
“The Politics of Reproduction” will focus on the global social, economic and political repercussions of new forms of reproduction, including assisted reproductive technology (ART) and transnational adoption. These new technologies have created a “baby business” that is largely unregulated and that raises a number of important social and ethical questions.
Do these new technologies place women and children at risk? Should there be limits on how reproductive technologies are used? How should we respond ethically to the ability of these technologies to test for genetic illnesses? And how can we ensure that marginalized individuals, for example, people with disabilities, women of color, and low-income women, have equal access to these new technologies and adoption practices?
The conference will feature numerous experts in the field of reproductive rights and reproductive justice, including Wendy Chavkin, professor of clinical population and family health at Columbia University’s Mailman School of Public Health; Michele Goodwin, Everett Fraser Professor in Law at the University of Minnesota and founder of the Center for the Study of Race and Bioethics at DePaul College of Law; Iris Lopez, associate professor of Latin American and Latino Studies at the City University of New York and author of “Matters of Choice: Puerto Rican Women’s Struggle for Reproductive Freedom”; and Loretta Ross, national coordinator and founding member of SisterSong, a reproductive justice collective.
View the full speakers’ list here, along with the program. Would love to hear from folks who are able to attend. If anyone wants to guest blog, let me know.
Chemicals in Toyland: The Consumer Product Safety Improvement Act (CPSIA) took effect this week, mandating stricter enforcement of lead and phtalates in children’s products and toys.
“While the ban was hailed as a victory for children’s health, it’s no guarantee that the products are safe,” reports NPR’s “Morning Edition.” “That’s because companies currently aren’t required to publicly disclose the chemicals they use in place of phthalates — and little is known about the health effects of one of the most widely used alternatives.”
Pthalates have been shown to affect the development of the male reproductive system in lab animals. They’re also present in some cosmetics, personal care products, pharmaceuticals, food packaging and cleaning and building materials — making them almost impossible to avoid. Check out NPR’s timeline of phthalate regulation and an interactive look at chemicals in the home.
IVF – New Lab for Studies: “In addition to helping thousands of infertile couples have children, ‘test tube’ babies are offering scientists a novel laboratory for resolving one of the most vexing debates in science: nature vs. nurture,” writes Rob Stein in the Washington Post.
In the first study of its kind, British researchers have studied children conceived through in vitro fertilization (IVF) to examine whether children whose mothers smoked during pregnancy were more likely to develop behavioral problems because of the toxic effects of smoking — as has been suspected — or because their mothers passed on a genetic predisposition to antisocial behavior.
The study, which appears to debunk the notion that smoking’s effects on the brain of a developing fetus result in antisocial tendencies, could be the first in a series of attempts to use the approach to disentangle whether genes or various prenatal exposures are responsible for later behavioral problems.
Friends Don’t Let Friends Get “Booty” Injections: And definitely not from a woman who administers shots without a medical license. Two women are now hospitalized in critical condition in Tampa, Fla. “It almost is bootleg cosmetology here,” said sheriff’s office spokesman JD Callaway.
Plus: The economy is having some effect on cosmetic enhancements, reports The New York Times. Natasha Singer writes that doctors and pharmaceutical executives thought antiwrinkle shots like Botox would be resistant to the downturn, but the latest earnings report from Allergan, the maker of Botox, fell almost 9 percent compared with a year earlier. Allergan’s sales of breast implants were down 12 percent.
“You could forecast that with implants, but the bigger question was, ‘How have injectables been holding up?’” said Gary Nachman, an analyst with Leerink Swann, a health care investment bank. “Now, even the injectables have been impacted significantly.”
Maternal & Child Health in the Obama Administration: “[...] President Obama has lauded and pledged to expand presidential initiatives to fight HIV/AIDS, TB and malaria — recognizing the sizeable effect they have had not only in saving hundreds of thousands of lives, but also in improving U.S. foreign policy. Now is the time for President Obama to elevate the issue of global family health to that high level,” argues Maurice Middleberg, vice president for public policy at the Global Health Council.
Council members, including global maternal health, child health and family planning organizations, are developing a framework for a Global Family Health Action Plan.
On Their Own Terms: “[B]etween the clinic demonstrations, the political discussions and the imprecations from the pulpit, too many American women have come to feel that their pelvis is public property. Slowly, quietly, a new abortion method has become part of the landscape, and it’s no accident that those women who have chosen it often cite reclaiming privacy and control as the reason,” writes Anna Quindlen at Newsweek, describing how RU-486 has allowed women to keep abortion private and personal.
Plus: Glamour magazine recently featured a whole section on abortion, acknowledging that one in three women will have at least one abortion by age 45. Eight women share their personal stories.
Salma Hayek Sparks Breastfeeding Discussions: By now you’ve probably heard about Salma Hayek breastfeeding an infant in Sierra Leone. ABC’s “Nightline” filmed Hayek during a trip to Africa to spotlight efforts to eliminate tetanus through vaccinations. The infant’s mother had no milk, so Hayek did what came naturally. Tracy Clark Flory nicely sums up some of the respectful and sophmoric public reactions.
Hayek, who is still breastfeeding her 1-year-old daughter, said, “I actually think my baby would be very proud to share her milk. And when she grows up I’m going to make sure she continues to be a generous, caring person.” Read more reactions and more about Hayek’s journey. The full “Nightline” episode is quite moving.
Happy Valentine’s Day: Some feminist advice from RH Reality Check. Plus, researchers at the University of Iowa report on what college-age men and women are looking for in a mate and how priorities have changed since the 1930s. While it’s nice to see that “chastity” is no longer an important characteristic, I’m surprised “similar political background” is considered unimportant as well.
And here’s the best act of defiance I’ve seen mentioned for Valentine’s Day — members of the Facebook group “A Consortium of Pub-going, Loose and Forward Women” are encouraged to “Join us on Feb. 14, Valentine’s Day, the day on which Indian women’s virginity and honor will self-destruct unless they marry or tie a rakhi. Walk to the nearest pub and buy a drink. Raise a toast to the Sri Ram Sene.” Swati Prasad explains the rebellion against the right-wing Sri Ram Sene.
Ever since the Women’s Health Initiative study found that women taking supplemental hormones had an increased risk of breast cancer, heart disease, and stroke, women struggling with menopausal symptoms have searched for safer alternatives. Companies that make bioidentical hormones (also called natural or compounded hormones) have been quick to jump into the void, often claiming that their products are safer and more effective than traditional “synthetic” hormones.
Unfortunately, there is no evidence to suggest that this is true. Yesterday, the American College of Obstetricians and Gynecologists (ACOG) issued a press release on such hormones.
ACOG expressed concern about the lack of testing of these products and also criticized the salivary testing that is often done in bioidentical hormone users under the assumption that it provides information needed for selecting a dosage:
“Despite celebrity testimonials touting scientifically unfounded benefits of compounded bioidentical hormones, the bottom line is that most have not undergone rigorous clinical testing for safety or efficacy, nor are they approved by the FDA. ACOG also stresses that salivary testing of a woman’s hormone levels is not useful because they vary within each woman depending on her diet, time of day, the specific hormone being tested, and other variables. Although monitoring salivary hormone levels is promoted by some as a means of ‘tailoring’ a hormone treatment to an individual, hormone therapy does not require customized dosing. “
The organization previously released a committee opinion in 2005 stating that “There is no scientific evidence to support claims of increased efficacy or safety for individualized estrogen or progesterone regimens prepared by compounding pharmacies,” but indicated that recent media attention to the topic led to yesterday’s statement.
The FDA has also set up a page for consumers of myths vs. facts about compounded “bioidentical” hormones, and expressed concern that “claims like these [about the effects of the hormones] mislead women and health care professionals, giving them a false sense of assurance about using potentially dangerous hormone products.”
Who Decides? A State-by-State Analysis: NARAL Pro-Choice America has released its 18th edition of “Who Decides? The Status of Women’s Reproductive Rights in the United States.” The report summarizes the state of women’s access to reproductive healthcare nationwide, including legislation considered and enacted in 2008. This year’s edition also examines attacks on choice in the states and in the courts and highlights pro-choice legislative and non-legislative victories, including NARAL’s Prevention First initiative.
Trading in “Barefoot and Pregnant” for Economic and Reproductive Justice: “The relevance of barefoot and pregnant remains central to an inclusive and just America,” writes Gloria Feldt. “Economic parity and reproductive justice are still intertwined, not only in the lives of individual women; they are indivisibly connected to our economic recovery as well.”
A Funny Thing Happened on the Way to the Clinic …: That’s the title of an essay in Exhale’s latest issue of its bilingual abortion zine, “Our Truths/Nuestras Verdades” (download the pdf). Yes, it’s the humor issue. As Exhale founder Aspen Baker writes in the intro to the issue:
Abortion is a serious personal issue that is hotly debated in public while real women have abortions in private, often in secret, and with little social support or understanding.
What could possibly be funny about that?
In this issue of Our Truths, we aim to find out. We witness funny women who use humor to get through tough times, truth-tellers who bust ridiculous myths about women who have abortions, and discover laughter that heals the soul. We also question humor that hides what’s real, judges or hurts others.
Massachusetts Adopts Breastfeeding Law: Massachusetts this month became the 48th state to offer legal protection to women who breastfeed their children in public. The Massachusetts Breastfeeding Coalition will provide mothers a “license to breastfeed” card with details of the new law and instructions on how to report violations, according to the Patriot Ledger.
The state Legislature passed the bill, “An Act to Promote Breastfeeding,” in December, and the governor signed it into law Jan. 9. Up to this point, women could have been prosecuted for indecent exposure or lewd conduct.
North Dakota and West Virginia remain the only states without breastfeeding legislation.
The Cutting Edge of Opera: “Skin Deep,” a new production opening in the UK, looks at the work of an unscrupulous fictional plastic surgeon: Dr. Needlemeier. At this BBC video slideshow, composer David Sawyer describes the opera as a story about “fear of death, vanity and the wish for immortality.” The “Skin Deep” website is far from superficial.
NABJ Conference on Health Disparities: The National Association of Black Journalists is hosting a conference on health disparities Jan. 30-31 at Morehouse School of Medicine.
The purpose is to “give journalists insight into health disparities affecting the African American community, resulting in significantly higher mortality rates. Learn how to cover major health and medical stories that make an impact. Topics include obesity, heart disease, stroke, HIV/AIDS, mental health and the aftermath of Hurricane Katrina.”
IVF Doesn’t Restore Fertility in Women Over 40: “A study involving more than 6,000 women who underwent the treatment at a large Boston clinic found that while [in vitro fertilization] could give infertile women younger than 35 about the same chance of having a baby as women typically have at that age, it could not counteract the decline in fertility that occurs among those older than 40,” writes Rob Stein at the Washington Post.
“Even as effective as IVF is, it can’t reverse the effects of aging,” said Alan S. Penzias of Harvard Medical School, who led the study, published in the New England Journal of Medicine. “We cannot reverse the biological clock.” Here’s the study’s abstract.
Kidney Transplants Less Likely to go to Women: A new study indicates that women over 45 are significantly less likely to be placed on a kidney transplant list than their equivalent male counterparts, even though women who receive a transplant stand an equal chance of survival. The study appears online in the Journal of the America Society of Nephrology.
“As woman age, that discrepancy widens to the point where woman over 75 are less than half as likely as men to be placed on a kidney transplant list,” said lead researcher Dorry Segev, M.D., a Johns Hopkins transplant surgeon. “If the women have multiple illnesses, the discrepancy is even worse.”
Fosamax Linked to Two Diseases: “Two recent reports have linked the osteoporosis drug alendronate (Fosamax) with rare but serious side effects,” reports the L.A. Times.
“In a letter to the New England Journal of Medicine published Jan. 1, a Food and Drug Administration official reported that since Fosamax was first marketed in 1995, 23 cases of esophageal cancer in patients taking the drug — including eight deaths — have been reported to the agency. And a USC study published in the January issue of the Journal of the American Dental Assn. reported that nine patients who were taking Fosamax suffered osteonecrosis of the jaw — a bone-killing infection — after having teeth extracted at USC dental clinics.”
Well, it Wasn’t All Bad: “Although the number of uninsured and the cost of coverage have ballooned under his watch, President Bush leaves office with a health care legacy in bricks and mortar: he has doubled federal financing for community health centers, enabling the creation or expansion of 1,297 clinics in medically underserved areas,” reports The New York Times. Kevin Sack writes:
For those in poor urban neighborhoods and isolated rural areas, including Indian reservations, the clinics are often the only dependable providers of basic services like prenatal care, childhood immunizations, asthma treatments, cancer screenings and tests for sexually transmitted diseases.
As a crucial component of the health safety net, they are lauded as a cost-effective alternative to hospital emergency rooms, where the uninsured and underinsured often seek care.
Despite the clinics’ unprecedented growth, wide swaths of the country remain without access to affordable primary care. The recession has only magnified the need as hundreds of thousands of Americans have lost their employer-sponsored health insurance along with their jobs.
In response, Democrats on Capitol Hill are proposing even more significant increases, making the centers a likely feature of any health care deal struck by Congress and the Obama administration.
(Another) Survey Says: Abstinence Pledges Ineffective: “The new analysis of data from a large federal survey found that more than half of youths became sexually active before marriage regardless of whether they had taken a ‘virginity pledge,’ but that the percentage who took precautions against pregnancy or sexually transmitted diseases was 10 points lower for pledgers than for non-pledgers,” reports the Washington Post.
“Taking a pledge doesn’t seem to make any difference at all in any sexual behavior,” Janet E. Rosenbaum of the Johns Hopkins Bloomberg School of Public Health, whose report appears in the January issue of the journal Pediatrics, told WaPo. “But it does seem to make a difference in condom use and other forms of birth control that is quite striking.”
Abortion Battle Brewing in South Carolina: “Abortion foes in the Legislature have sown the seeds of what could develop into another battle over regulating abortion in South Carolina,” reports The State. “Seven S.C. House lawmakers have prefiled a bill that would require women seeking abortions to be given a list of clinics and other facilities that provide free ultrasounds. That list could include pregnancy crisis centers — many run by antiabortion groups — that actively discourage abortion and encourage women to choose other alternatives.”
Genetic Testing and Ambiguity: “‘Information is power,’ has become a common mantra. But for many people seeking answers through genetic testing, all the DNA probing ends in this twist: Less certainty, not more,” begins this NPR report. The story focuses on Nashville novelist Susan Gregg Gilmore, who sought testing for mutations in the genes BRCA 1 and BRCA 2, which are associated with an increased risk of breast and ovarian cancers.
Cut Costs, Not Care: The L.A. Times has published the first installment of an ongoing feature on reducing health care costs. Part one covers drugs, doctor visits, surgery, flexible spending accounts, preventive care and insurance. Scroll down for links to online resources.
The Year in Medicine A-Z: Time magazine offers its annual alphabetical roundup of health stories and breakthroughs that made the news. (Ed. note – reading through it all requires clicking through 37 pages. “Single page” feature, anyone?)
Don’t Blink: Via Feminist Peace Network: “As we come to the final stretch of 2008, plagued as we are with the usual collection of horrors–Gaza burning, Tennessee buried in toxic ash, women and children being raped and killed in the Congo, and on and on, I’m sure y’all were just as relieved as I was to know that the FDA is considering approval of a glaucoma drug for eyelash enhancement, an idiocy I would have previously thought would be confined to the cable shopping networks.”
Missing on TV: GLBTQ Women: “Though 2008 comes to a close with word of possible new queer female characters on the horizon in the coming year, the prospects for lesbians and bisexual women on television over the last twelve months have been somewhat grim,” writes Karman Kregloe at AfterEllen.com. “This has been particularly true for lesbians, whose numbers on scripted network television have now dwindled to zero.”
Deep Thoughts for the New Year: “As the country plunges into recession, will financial hardship demote the pursuit of physical perfection?” asks The New York Times. A classic response:
“There comes a point when you are putting too much time and money into your vanity,” said Peri Basel, a practice consultant in Chappaqua, N.Y., who advises cosmetic doctors on marketing strategies. “For me, the vanity issue is: Where does it stop? If you are going for buttock implants, do you really need that?”
Necessary Medicine?: “President-elect Barack Obama placed a heavy bet last week that the recession-wracked country he is about to inherit has finally reached its tipping point on health care,” writes Kevin Sack at The New York Times.
It might seem counterintuitive to gamble that political and economic forces would converge at such a low point after more than half a century of failure. The Treasury has never been so overcommitted, and providing “affordable, accessible health care for every single American,” as Mr. Obama describes his goal, would require substantial resources up front.
But Mr. Obama, like others, sees political opportunity in the country’s economic distress, and he threw in last week with those who argue that the financial crisis has only made it more imperative to remake the health delivery system — that, in fact, economic recovery depends on it.
U.S. Health Stagnates for Fourth Year in a Row: During the 1990s, health improved at an average rate of 1.5 percent per year, but improvements against national health measurements have remained flat for the last four years, according to the recently released “America’s Health Rankings.” The report cites smoking, obesity and the uninsured are the nation’s three most critical challenges. Vermont ranks as the healthiest state; Louisiana is the least healthiest.
Vatican Issues Instruction on Bioethics: “The Vatican issued its most authoritative and sweeping document on bioethical issues in more than 20 years on Friday, taking into account recent developments in biomedical technology and reinforcing the church’s opposition to in vitro fertilization, human cloning, genetic testing on embryos before implantation and embryonic stem cell research,” reports The New York Times. The picture is worth 1,000 Hail Mary’s (click on the pic to see the full-size image at the NYT).
Kelly Hills has read the full document and shares her thoughts at Women’s Bioethics Blog:
Reading the Dignitatis Personae is an exercise in patience and self-control; it’s hard to resist the urge to go wake someone up to have someone to discuss such wince-inducing logic as this: This ethical principle, [ed- that life begins at conceptions] which reason is capable of recognizing as true and in conformity with the natural moral law, should be the basis for all legislation in this area.
I can tell you with full certainty that such ‘reasoning’ (a term I use loosely) would fail a philosophy 101 test. But if you can get through the document, you’ll learn that the fresh-off-the-newstands update to Catholicism forbids any reproductive act that does not result in fertilization and implantation happening as a result of the sexual act between a married couple. Or put more simply: if the technology assists in intra-uterine conception, YAY! If conception occurs outside the uterus, BOO!
Why Can’t a Kiss Just be a Kiss: “We live comfortably, if strangely, in a pseudo-Sapphic era in which seemingly every college woman with a MySpace page has kissed another girl for the camera; but for men who kiss men, it’s still the final frontier,” writes Hank Steuver in the Washington Post. A good look at some recent films, including “Milk.”
OBOS Reference of the Week: A Harvard grad (’82) remarks at a sex talk put on by Harvard’s Peer Contraceptive Counselors: “This wouldn’t have happened 10 to 15 years ago. Except for ‘Our Bodies, Ourselves” — we would steal our girlfriends’ copies.”
Hidden Victims of Abuse: “Women in the United States with disabilities are significantly more likely to suffer from domestic violence than are other women,” writes Annemarie Taddeucci at Women’s eNews, adding that “many battered women’s resources are not accessible to people with disabilities. Safe havens and the legal system may not be equipped to deal with a victim who is deaf or cognitively impaired, for example.”
The Department of Justice’s Office on Violence Against Women will meet in Nashville, Tenn., Dec. 16-17 to discuss improving coordination between disability-service providers and institutions involved with domestic violence, including battered women’s shelters, the police and the courts.
When a woman becomes pregnant after experiencing infertility, those around her are likely to expect nothing short of complete joy. Pregnancy, after all, is the long-awaited goal.
But as Jen Dozer, a freelance writer and registered nurse, writes in this article published at Our Bodies Ourselves, a woman who has experienced infertility or a pregnancy loss may find it difficult to push aside feelings of worry and concern.
“The long-desired pregnancy may not be the joyous experience she has dreamed about,” writes Dozer. “The experience of infertility brings its own baggage to a pregnancy: grief for previous losses; anxiety; and fear that her body, unable to conceive on its own, may not be able to carry a pregnancy.”
In addition to discussing the emotional effects of infertility that a woman may experience once pregnant, Dozer lists a number of useful ways to “ameliorate the doom and gloom expectations that years of repeated failures have led you to expect.” Links to related resources are also provided.
Dozer writes from experience. She went through almost two years of infertility before giving birth to a boy on Mother’s Day 2008 and blogs about infertility, motherhood and health care at MrsSpock.blogspot.com. She recently spoke with OBOB.
Our Bodies Our Blog: What was your experience with infertility?
Jen Dozer: It took almost two years to conceive our son. I had never had any sign that there could be anything wrong with me reproductively. After 12 months of unsuccessful attempts, my husband and I underwent testing. Other than my progesterone being slightly low, and a mildly misshapen (arcuate) uterus that should not interfere with conception, all the tests were normal. Our official diagnosis was unexplained infertility.
According to our doctor, we had a 3-to-4 percent chance of conceiving on our own. We underwent several cycles of me taking Clomid to stimulate my ovaries to release eggs, and one cycle of Clomid combined with intrauterine insemination. I was set to begin injecting myself with stronger medication when I became pregnant spontaneously. Our doctor could offer no explanation other than the previous medicated cycles may have “jump-started” things. A non-answer, really.
Most infertility patients are able to conceive with relatively low-tech means. In the future, for us, there are no guarantees about how easy or how difficult it might be to have a second child. There is always the possibility that we may need IVF to conceive, or we may never have a successful pregnancy again. There is a lot of uncertainty.
OBOB: In the OBOS article you wrote: “If a pregnancy finally does occur, it can be difficult for a woman who has experienced infertility to view herself as just another pregnant woman.” What was your pregnancy like, and how did you cope with your fears or concerns?
JD: There was definitely a higher level of anxiety, and I have never even had a loss. I can’t imagine the anxiety level I would feel after a stillbirth, or six miscarriages, or seven years of infertility instead of 20 months. I approached my ultrasounds and the heartbeat searches with the Doppler with trepidation: Was my baby still alive? I don’t think that is going through the average woman’s head. Disaster could be around any corner.
I think I called the office nurse in a panic twice a month. My OB was kind and bumped me to appointments every two weeks by the time I was 20 weeks. I needed the extra reassurance. I was successful in not caving in to renting a Doppler to listen to my son’s heartbeat. I really wanted to have faith in my body. It can be almost an impossible task when your body has shown month after month concrete proof of its dysfunction. How could I be sure that it could get the pregnancy and birth part right, too? Those were uncharted waters. After all, there had been no indication that my body would have problems with conception.
To try and cope with the ramped-up anxiety, I chose a provider — an OB who worked with two midwives — who was known for trusting women’s bodies, yet at the same time sensitive to my background of infertility. It’s easy to say, “Get over it,” or, “Trust birth,” but those statements just invalidate the very real experience of having a body that doesn’t function properly.
What I loved about my providers was that no one ever said anything like that to me. They took the stance of “innocent until proven guilty” when it came to my body, yet still were willing to provide extra support in the form of more appointments, and taking the time to address my anxieties and reassure me that my baby was fine. In the end, when there really was a problem with my son, they took it seriously. Perhaps I wasn’t “supposed” to worry or fret over my body’s ability to carry a pregnancy, but, despite my best efforts, I did. The head can only strong-arm the heart so much.
I also did a lot of reading good birth stories. My copy of “Spiritual Midwifery” and “Ina May’s Guide to Childbirth” were well-thumbed. I avoided watching birth shows on TV. They tend to show pregnancies as complicated and births as emergencies, and I had enough fear rolling through my head already. I tried to avoid Googling my symptoms. Dr. Google is notoriously full of misinformation.
I had some small experience as an OB nurse, and I found calling and asking the OB nurse to be more helpful and less likely to send me into a panic. Last, I took a hypnobirthing class. I used my relaxation techniques every night. I admit, this class would probably not be a good match for the average infertility patient, who would likely feel they had nothing in common with their classmates. In our circles, it seems like hubris to desire more from a birth than a living child.
Earlier this month, Congress passed and the President signed into law the Prenatally and Postnatally Diagnosed Conditions Awareness Act, a bill “to amend the Public Health Service Act to increase the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions.”
The act focuses on increasing knowledge and resources, articulating the following purposes:
increase patient referrals to providers of key support services for women who have received a positive diagnosis for Down syndrome, or other prenatally or postnatally diagnosed conditions, as well as to provide up-to-date information on the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes;
strengthen existing networks of support through the Centers for Disease Control and Prevention, the Health Resources and Services Administration, and other patient and provider outreach programs; and
ensure that patients receive up-to-date, evidence-based information about the accuracy of the test.
Services authorized by the act may include a telephone hotline for those seeking support with regards to diagnoses, creation of a registry of those willing to adopt children with diagnoses such as Down syndrome, further education of health care providers on the issues, and expansion of other support programs.
A joint response issued by the Disability Rights Education and Defense Fund, Generations Ahead, National Women’s Health Network, Reproductive Health Technologies Project, and World Institute on Disability called the law “a positive step toward providing better information and support to pregnant women and new mothers whose fetus or newborn is diagnosed with a disability.”
The organizations also note that “With Democratic Senator Edward Kennedy as an original co-sponsor, the Act does not include anti-choice language nor restrict the ability to obtain an abortion, even though it was authored by Kansas Republican Senator Brownback, a staunch opponent of abortion.”
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