A Publication of the
Jacobs Institute of Women's Health
Volume 8, Number 2, June 2000
New Products Remain Out of Reach for Many
House Representative Sue Kelly (R-NY), co-chair of the Congressional Caucus for Womens Issues, was on hand to point out that Congress is looking seriously at the health problems faced by women, including lack of access to medications. Kelly exhorted the audience members, "Please keep doing what you're doing, and we in Congress will keep fighting to make sure you have what you need, namely money and support" for more research and increasing public awareness.
Debra Lappin, JD, immediate past chair of the Arthritis Foundation and currently the Foundation's senior chair of Health Policy, explained the barriers to new and effective treatment for chronic, disabling disease. For example, Lappin pointed out, Enbrel (etanercept), a new self-injectable medication for rheumatoid arthritis, costs about $1,000 per month. The pharmaceutical industry defends the high price of medications as necessary to cover the enormous cost of research and development, the limited time in which to recoup its investment, and the need to offset reduced drug prices in Canada and Europe. Also, individual physicians may be reluctant to prescribe new, unfamiliar drugs, resulting in low initial sales.
Further, insurers attempt to hold down cost by limiting access to expensive new therapies, for example, by insisting patients first try and fail less expensive therapies or by placing caps on the total dollar amount of prescription drugs covered. Research shows that limiting access to medications or other treatment actually forces costs up, as patients then have more office visits, more emergency room admissions, and more hospitalizations. "We know that a high-cost investment today saves money in the long term, but who is looking at this?" asked Lappin.
Finally, as a matter of policy, Lappin called on the National Institutes of Health (NIH) and other public health agencies to further address real issues of cost and access. She concluded by encouraging Congressional leaders and health policy advocates to support a prescription drug benefit for Medicare recipients.
Sara Radcliffe, research manager of biologics and biotechnology in the Scientific and Regulatory Affairs Section of Pharmaceutical Research and Manufacturers of America (PhRMA), described the numerous drugs recently approved or in development for diseases that primarily, exclusively, or disproportionately affect women. "These are exciting times for researchers," she noted, particularly because of increasing knowledge about genetics and DNA. "Because we know more about genetics, we may be able to target drug trials to those who are likely to respond, which would make testing more efficient."
Such testing would raise other complicated issues, such as safety concerns. For example, Radcliffe noted, manufacturers must test drugs in populations other than the intended population, which brings up "ethical issues about testing in patients you know probably won't respond.
"There is a need for continued research," said Radcliffe, noting that with increased understanding of variables in disease, such as gender differences, research must continue to divide and regroup populations to better understand diseases and drug effects.
Anne Grady, legislative assistant for health care, women's issues, budget, and aging issues to Senator Patty Murray (D-WA), illustrated how research continues to discriminate against women by citing a protocol for a study of HIV that required subjects to report to a clinic for testing and counseling several times a week and to keep a detailed health journal. "The study was so burdensome, no women participated," said Grady. "The researchers failed to understand that many women with HIV are single parents with low incomes and limited access to child care." The NIH went on to count this study as one that addressed women's health issues, even though no women were in the study.
Grady described Senator Murray's advocacy of a strong, comprehensive patients' bill of rights that allows women direct access to obstetric and gynecologic care, as well as equal access to clinical trials and specialty care, and encourages full disclosure of benefit limitations. The Senators priorities also include the need to educate women about health care options, empowering women to make better choices by giving them more and better information.
"Medicare is the older woman's health care program, and we cannot afford to make the same mistakes as private insurers have," said Grady. By addressing problems in Medicaid and Medicare, some barriers can be removed. However, Grady noted, "It takes a concentrated, aggressive effort to get rid of decades of bias."
Discussion points between audience members and speakers included the need for more pharmacologic research on drugs for pregnant women with chronic diseases, the need to educate more people about eligibility for clinical trials, and considerations for elevating the NIHs Office of Women's Health to the status of an independent center. The next breakfast seminar will be Wednesday, June 21 (see On the Agenda for details).[email protected]
July 16-19, Envisioning Our Future: Peace With Justice, the national conference of the National Coalition Against Domestic Violence, Portland, OR. For more information, call 303-839-1852 or visit www.ncadv.org on the web.
July 26-28, National Center for Health Statistics 2000 Data Users Conference, Bethesda, MD. For more information, visit www.cdc.gov/nchs/events/duc2000/duc_announc.htm on the web.
August 18-19, Bridging Rural Women's Health: Into the New Millennium, sponsored by the Penn State College of Medicine and others, Washington, DC. For more information, call 717-531-7965.
September 7-9, North American Menopause Society annual meeting, Orlando, FL. For more information, call 440-442-7550 or visit www.menopause.org on the web.
September 14-17, Annual Executive Summit on Women's Health, sponsored by the National Association for Women's Health, Scottsdale, AZ. For more information, call 312-786-1468 or visit www.nawh.org on the web.
September 20-23, Ovarian Cancer: Silent No More, third annual advocacy conference of the Ovarian Cancer National Alliance, Washington, DC. For more information, call 202-331-1332 or visit www.ovariancancer.org on the web.
Tables of contents for Women's Health Issues, the bimonthly journal of the Jacobs Institute, can be automatically e-mailed at no charge by subscribing to ContentsDirect. ContentsDirect provides advance notice of articles with anticipated publication date and detailed information about the journal. Registration is free, and users can select as many journal and book titles as desired from publishers Elsevier, Pergamon, North Holland, and Excerpta Medica. For more information, go to www.elsevier.nl/locate/ContentsDirect or e-mail [email protected]
National Institutes of Health Consensus Statement on Osteoporosis Prevention, Diagnosis, and Therapy is available by calling 888-644-2667 or by visiting http://consensus.nih.gov on the web.
Fitness and Bone Health, a brochure by the National Institutes of Health Osteoporosis and Related Bone Diseases-National Resource Center, discusses excessive exercise and risky athletic training behaviors among girls and women in an easy-to-read format. For a free copy, call 800-624-2663 or visit www.osteo.org on the web.
Free clinician and patient information on folic acid to prevent birth defects is available from the March of Dimes. Call 800-367-6630 or visit www.modimes.org on the web.
The Robert Wood Johnson Community Health Leadership Program annually provides ten $100,000 awards to outstanding individuals to create or enhance health care programs for unserved or underserved communities. Nominations are due September 16, 2000. For more information, call 617-426-9772 or visit www.communityhealthleaders.org on the web.
Guidelines is designed for use by clinicians and health plans to meet the expectations of the HEDIS® Management of Menopause measure. It includes basic principles of patient counseling; topics to cover in menopause counseling; information on methods for managing symptoms and diseases of advancing age, such as coronary heart disease and osteoporosis; and resources for clinicians and women. Guidelines assists clinicians in answering women's questions about treatment options, risks and benefits of treatment, and current evidence. Development of Guidelines was supported by The Commonwealth Fund.
Managed Care, copublished with the American Association of Health Plans (AAHP), offers health plans and clinicians ideas and strategies for improving services to women. It covers primary and preventive care, reproductive health, mental health, chronic health conditions, and issues of quality. Each chapter looks at specific issues, such as recommended levels of preventive care, and proposes solutions and potential partners that may assist health plans in providing women optimal care.
Value Purchasing, copublished with the Washington Business Group on Health, also addresses primary and preventive care, reproductive health, mental health, and chronic health conditions. Each chapter includes the business case for addressing the issue and offers employers strategies in areas such as the work environment, on-site services, and health benefits. Managed Care and Value Purchasing were supported by The Commonwealth Fund, CIGNA HealthCare, Merck & Co., Inc., Wyeth-Ayerst Laboratories, and Eli Lilly & Company, with additional funding from the Maternal & Child Health Bureau and Pharmacia & Upjohn.
The cost is $7.50 for Guidelines, $15 for Managed Care, and $15 for Value Purchasing, plus shipping; Jacobs Institute members receive a 20% discount. To order, call 202-863-4990 or click here.
How We Got Here
The organizing committee was chaired by George W. Morley, MD, FACOG, and made up of Mason C. Andrews, MD, FACOG; Constance J. Bohon, MD, FACOG, past chair of the ACOG District IV Junior Fellows; Bonnie Flood Chez, RNC, MSN, representative of the Nurses Association of ACOG (NAACOG); Charles E. Gibbs, MD, FACOG (founding president); Richard F. Jones III, MD, FACOG; and Janet MacNamara-Harrison, public member of the ACOG Board. Drs. Morley and Jones were both past presidents of ACOG. Three hundred and twenty-seven individuals supported the Institute as founding members.Grant Applications Sought for 2001Ortho-McNeil Award
We are currently accepting applications for the 2001 Jacobs Institute/Ortho-McNeil Pharmaceutical Scholar award. Research that considers the changing health care environment, the unmet need for primary and preventive health services, the historic lack of research on women's health, and the importance of social, cultural, legal, economic, and behavioral factors influencing the financing and delivery of health care to women is eligible. The award is a one-year, $30,000 grant. The application deadline is October 15, 2000. For more information, please contact the Jacobs Institute at 202-863-4990 or click here.New Members
Welcome to the following new members of the Jacobs Institute, who joined from February 1 to May 12, 2000. To become a member, complete and return the form below. For more information on membership, call the Jacobs Institute at 202-863-4990 or click here.Katherine V. Anderson, RN
Raul Artal, MD
Gwenne R. Baile, CNM
Linda Bennington, CNS
Judith A. Berg, RN, PhD
Venice Bernard-Wright, MD
Chicago Department of Public Health
Ellen Cohen, MD
Umur Colgar, MD
Karen Scott Collins, MD, MPH
Debra Copeland, RN, DNS
Carolyn Crandall, MD
Thomas Dayspring, MD
C. Domoney, MD
Mary Jane England, MD
Elizabeth A. Farrell, MD
Susan Calvert Finn, PhD, RD
Yonat Floersheim, MD
Judy Gavaler, PhD
Kenneth M. Gelman, MD
Barbara Gerolimatos, PhD
John G. Gianopoulos, MD, FACOG
Carol J. Hogue, PhD
Rosemary B. Hughes, PhD
Marianne Jackson, MD
E. Kitti Johnson
Boris (Bari) Kaplan, MD
Douglas H. Kirkpatrick, MD
Kristen J. Kratzert, MD
Silvia Leon, MD
Frank Luzuy, MD
Ann C. McFarland, FACMPE
Susan S. Nelson
Katherine M. Newton, PhD
Thierry D. Pache, MD
David J. Portman, MD
Monica Pines Ribeiro, MD
Usha Sambamoorthi, PhD
Michael Jay Schoenfeld
Sarah H. Scholle, DrPH
Janice M. Shier, MD
Susan J. Taylor, MD
Carol Teutsch, MD
Luanne E. Thorndyke, MD
Judy Turner, MD
Washington Business Group on Health
Lucinda Webb, NP
Katherine Weissbourd, PhD
Women's Health Management Solutions, LLC