Thursday, December 1, 2011

Ask not what science can do for you

Coast Guard Lt. Cmdr. Kimberly Roman, a general physician,
examines a Trinidadian woman at the Couva District Health Facility
My workaday business is scientific editing. I just completed a behemoth job of hundreds of pages, all focused on reporting the findings of clinical trials (meaning trials involving humans instead of other animals) of a drug that keeps people alive. Among those trials was one in which healthy people participated, which is one way that companies who develop therapies test their treatments. It's important to know what outcomes are in healthy people as well as those who are targets of the therapy.

I read in these papers how the healthy people responded to the therapy--how they underwent needle sticks for blood draws so that researchers could analyze seemingly every last chemical in their blood, how they dealt with side effects minor and greater, including headaches, vomiting, and other distress, and how their participation helped researchers determine the need for a lower dose. As I read about them and the details of their participation, I though, "Wow." Here are these healthy people entering clinical trials--yes, they do get paid--and their participation helps guide the application of these therapies for people who would die without them. That is some citizen science.

If you've ever taken an FDA-approved drug for anything, you've benefited from these people--paid or unpaid--who have entered into clinical trials. We're all beneficiaries of their contributions, their blood draws, urine samples, headaches, gastrointestinal distress, and time away from their families. And when it comes to women, we can contribute to these trials in many, many ways.

Becoming a part of clinical research means being a part of the practice of science. When I think of the importance of women in clinical research, I think about women like Elizabeth Glaser, who established the Elizabeth Glaser Pediatric AIDS foundation before she--and one of her two children--died of AIDS. Part of the foundation's focus is funding research into AIDS prevention and cure in children. Elizabeth contracted HIV while receiving a blood transfusion during the birth of her daughter, Ariel, and she passed the virus to both her daughter and her son, Jake, who followed. Ariel died in 1988, but Jake is now a healthy adult, still alive in part thanks to his mother's work to fund research and to people who participate in clinical trials for therapies against HIV/AIDS. 

Today, December 1, is World AIDS Day. The theme for this year's day is, "Leading with science, uniting for action." Since the advent of the first-reported cases of HIV in 1981, more than 25 million people have died of AIDS worldwide. In 2008, 2 million people died, in spite of therapies that now save lives. Almost everyone who now lives with HIV lives in low- and middle-income countries and has no access to these effective therapies. There still is no cure for HIV. 

In the United States, about 1 million people have an HIV infection. Of these, women represent about 27% of new infections each year and 25% of those infected. Clinical trials are one critical way that these women--and their children--can have medical interventions they need to remain healthy. It is one way to lead with science, to unite for action.

Not every day is World AIDS Day, but every day, someone, somewhere--a woman, mother, sister, daughter--needs medical interventions. Historically, women have been underrepresented in clinical studies. Mother, scientist, and four-time breast cancer survivor Susan Niebur, now in deep pain from metastatic breast cancer, has called--repeatedly--for more research into fighting metastatic breast cancer. As she notes, no woman survives this cancer. Thirty percent of cases of breast cancer progress to metastatic (spreading) breast cancer, yet only 3% of funding goes to researching it, even as most women diagnosed with it die within three years. Niebur observes that wearing a ribbon does not cure cancer. She writes, "I just want more time." 

Part of giving women with breast cancer more time is participating in clinical research studies--studies that need both women who have cancer and women who do not--so that research can advance, drugs in the pipeline can move forward in testing. As Niebur has written, we need an Army of Women willing to get into the trenches of research, get needle sticks, give up urine, and possibly vomit occasionally, so that other women--all women--can benefit from clinical research.

If that need on behalf of other XXers isn't sufficient, keep in mind that participation in trials can also include other benefits. More and more women are finding that participation pays, literally, sometimes in the thousands of dollars. But it's not just the money--some women have even reported that their participation has led them to better health, given them more time to spend with their children as they make this money in a few days at a time throughout the year. These are not trivial benefits, and the contributions women make when they participate in trials are not trivial either.

Would you like to learn more about clinical trials, how they work, and where you might find one in which you could participate? A place to start is ClinicalTrials.gov, a database of ongoing and past trials in the United States and around the world. After all, in spite of all of those personal benefits for a participant, the most important part for those who suffer and die is that you participate. In this case, you do not ask science what it can do for you. You ask, on behalf of girls and women and everyone everywhere, What can you do for science?

Emily Willingham 

3 comments:

  1. Since my husband is a researcher, we've never passed up an opportunity for a trial we qualify for. (The hard thing sometimes can be finding one we qualify for AND that we can schedule.)

    One of the rewards I've found after my son's autism diagnosis is that we have a lot of opportunities. Everything from papers his therapists are working on to studies by his developmental center. And they can also benefit us. When my daughter is born next year, she'll be involved in an Autism Sibling study that will not only help researchers gather information on families, genetics and early diagnosis but also mean that we will have a team watching her from Day 1 so I won't have to agonize over whether she is showing any symptoms of autism because someone will be watching for me. A huge relief.

    ReplyDelete
  2. Just signed up with the Army of Women in honor of my sister's best childhood friend who lost her battle today to metastatic breast cancer.

    ReplyDelete
  3. @Jessica, I (Emily) can understand that level of relief, as we had the same concerns with our third child.

    @Anonymous, we are deeply sorry for your loss. Thank you for your comment.

    ReplyDelete