AEGiS-BAR: HIV+?: How To Get The Care You Need

Important note: Information in this article was accurate in 1996. The state of the art may have changed since the publication date.

HIV+?: How To Get The Care You Need

The Bay Area Reporters - January 8, 1996
Bill Thorne, ACT UP/Golden Gate Writers' Pool

Having AIDS or HIV creates additional obstacles for survival and quality of life in an already difficult world. How one chooses to deal with the medical aspects of HIV infection often dictates the quality and perhaps length of life. Patients should develop a proactive approach to self-care and self-advocacy.

ACT UP/Golden Gate has received thousands of calls over the years from patients requesting help in receiving proper care, getting specific drugs and dealing with bureaucracies such as insurance companies, HMOs and government agencies. ACT UP has assisted patients when we could. It has become very clear to us that our society has no "training program" in how to deal with a difficult situation such as HIV infection. ACT UP/Golden Gate is not an individual advocacy organization, instead we want patients to learn to advocate for themselves. Often self advocacy translates into a larger community benefit.

Part I: The Tools Of The Trade

HIV-infected individuals should acknowledge their situation as early as possible. The first step is psychologically accepting the situation. This may require professional or peer-support help of some kind. The person infected who cannot "deal" with the situation psychosocially is profoundly handicapped in all other aspects of living with HIV.

Next patients must self-educate. Two useful books are HIV+ Working the System by Robert A. Rimer and Michael A. Connely and Nutrition and HIV: A New Model for Treatment by Dr. Mary Romeyn. Browse the local bookstore's HIV or Health Section to see which books are best. Education must continue on a more regular basis due to constantly changing treatments and prophylaxis. Project Inform has regular town meetings, publications, and a hotline that can be reached at (415) 558-8669.

AIDS Treatment News by John James, (415) 255-0588, and BETA (The Bulletin of Experimental Treatments for AIDS), (415) 487-8064 are excellent resources. Healing Alternatives Foundation, the local AIDS Buyers Club, has an excellent resource library and librarian. Women Organized to Respond to Life-Threatening Diseases (WORLD), (510) 658-6930, is an excellent resource for HIV+ women. OUTline is a low cost, easy to use, on-line computer service for people with HIV. OUTline includes a lot of up-to-date treatment information, including some of the above, and can be reached at (415) 554-0555.

Patients must make many important decisions. Securing a health insurance plan early on is essential to good care. Knowledge of how the plan works is important to receive the best care, whether it be through public programs such as Medical and Medicare or through an HMO or insurance company, Knowing the avenues of appeal available if a dispute arises is also important. Some companies have Patient Relations or Customer Service Departments and the Department of Insurance, (800) 927-4357 and the Department of Corporations, (415) 557-3787 (for HMOs), are available to all California residents. AIDS Benefits Councilors on Castro Street, (415) 558-9845, is a good place to start to learn how to educate yourself regarding health, disability, life and long term disability insurance.

Choosing a primary care provider is another equally important area. Traditionally patients with life-threatening illnesses have conceded decision-making to their doctors. The AIDS epidemic has taught us that in fact the best approach to managing HIV is through a true partnership between physician and patient. The physician must be aware of the latest developments in HIV care and be able to educate the patient about available clinical trials. Patients know their situation best and must learn to communicate that situation to the doctor. It is difficult to deal with switching doctors during a medical crisis, therefore a partnership should be developed early. Sometimes conflicts will develop between even the most cooperative of doctors and patients. This is a normal part of any human interaction. and neither party should be afraid of disagreement. The ability to resolve differences to the satisfaction of both parties is crucial. If a certain patient/doctor arrangement cannot do this, it is the patient's responsibility to dissolve it and start interviewing new doctors.

Part II: Getting the Job Done

Unfortunately it is not enough to just have the tools available. The patient must now learn how to use the tools in the most efficient manner possible. Self-empowerment is the key to getting what you need. It is necessary for patients to be confident of their ability to determine which treatments and trials are best and able to advocate for their own best interests. This degree of self-confidence doesn't come easy. The interests of the drug company, researchers, regulators and third party reimbursers do not always intersect with the best approach for patients. Patients must learn to recognize each player's interests and objectives and push for the best treatment for themselves - even when all other parties refuse to cooperate. Multiple creative approaches may be needed to attain the care the patients want.

ACT UP/Golden Gate has formed the Self Advocacy Working Group. This group will meet on the first and third Tuesdays of each month at 6 p.m. The first meeting will be next Tuesday, January 16th. If you or someone you care about needs to learn the skills to get the best care possible or are experiencing a problem getting a particular therapy please join us. ACT UP/Golden Gate's regular meetings are Treatment Issues every Tuesday at 7:30 p.m. and General Body Meetings every Thursday at 7:30 p.m. at 592b Castro St. ACT UP/Golden Gate is not affiliated with ACT UP/San Francisco.t

ACTion UPdate

Stop Internet Censorship of AIDS Information

Please contact the federal legislature and advise them of your opposition to pending legislation regarding use of the Internet to distribute information. Currently the Communications Decency Act would criminalize certain AIDS information through its implementation.

Please contact:

Representative Nancy Pelosi (415) 556-4862

Senator Barbara Boxer (415) 403-0100

Senator Diane Feinstein (415) 249-4777

Tell them it is unacceptable to limit distribution of information about AIDS prevention and treatment. The proposed legislation must be changed or amended to reflect this.
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Always watch for outdated information. This article first appeared in 1996. This material is designed to support, not replace, the relationship that exists between you and your doctor.

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