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The Resource Train

A Guide to Getting Good HIV/AIDS Medical Care

July 2000

(Information in this article was gathered by reviewing different local and national Patient Bill of Rights, as well as articles written on the subject.)

After all the insane situations that my co-worker Gerry and his mother experienced during their recent hospital stays, I decided to write a little bit on tips for finding a good HIV doctor and the rights you should expect as a patient. I was outraged when he told me that the staff refused to help his mother with a bath, and that during his hospital stay he had to ask nurses to wash their hands before they touched him. Augghhh! I will start with some questions that you might want to ask as you are interviewing for a potential doctor. Yes, I did say interview. You should always "check out" your potential doctor because this is a relationship that may last even longer than some of your sexual partners.

I am taking my "interview questions" from an article I read by Rick Sowadsky. Questions to ask include:

  1. How much experience do you have in treating HIV/AIDS?

  2. How many people with HIV/AIDS have you treated?


  3. (Women only) How much experience do you have in women's health?

  4. Approximately what percentage of your patients have HIV/AIDS?

  5. How up-to-date are you with the latest treatments for HIV/AIDS? Are you on a clinical trial committee/coalition?

  6. How many doctors on your staff are knowledgeable in treating HIV/AIDS? What are their names? Are the nurses on staff AIDS certified?

  7. What is your treatment philosophy? Passive vs. Aggressive? Holistic vs. Western medicine, or a combination of the two?

  8. Do you work with mental health professionals? Is there a mental health professional on staff at your clinic?

Now, once you have found your fabulous new HIV doctor, this is a guide for how you want them to work with you. . . .

HIV Patient Bill of Rights

  1. The person with HIV has the right to considerate and respectful care regardless of race, ethnicity, national origin, religion, age, sexual orientation, gender or payment source.

  2. The person with HIV has the right to, and is encouraged to, obtain current and understandable information concerning diagnosis, treatment and prognosis.

  3. The person with HIV has the right to know the identity of the physician, nurses and others involved in his/her care, including those who are students, residents or other trainees.

  4. The person with HIV has the right to work with the physician or nurse in establishing their plan of care, including the refusal of a recommended treatment, without the fear of reprisal or discrimination.

  5. The person living with HIV has the right to privacy.

  6. The person living with HIV has the right to expect that all records and communication are treated as confidential except in the case of abuse.

  7. The person living with HIV has the right to review his/her own medical records and request copies of them.

  8. The person living with HIV has the right to expect that an advance directive (such as a living will, health care power of attorney) will be honored by the medical staff.

  9. The person living with HIV has the right to receive timely notice and explanation of changes in fees or billing practices.

  10. The person living with HIV has the right to expect an appropriate amount of time during their medical visit to discuss their concerns and questions.

  11. The person living with HIV has the right to expect that his/her medical caregivers will follow universal precautions.

  12. The person living with HIV has the right to voice his/her concerns, complaints and questions about care and expect a timely response.

  13. The person living with HIV has the right to expect that the medical caregivers will give the necessary health services to the best of their ability. If a transfer of care is recommended, he/she should be informed of the benefits and alternatives.

  14. The person living with HIV has the right to know the relationships his/her medical caregivers have with outside parties (such as health care providers or insurers) that may influence treatment and care.

  15. The person living with HIV has the right to be told of realistic care alternatives when the current treatment is no longer working.

  16. The person living with HIV has the right to expect reasonable assistance to overcome language (including limited English proficiency), cultural, physical or communication barriers.

  17. The person living with HIV has the right to avoid lengthy delays in seeing medical providers; when delays occur, he/she should expect an explanation of why they occurred and, if appropriate, an apology.

As a Patient, You Have the Responsibility To . . .

  1. Provide your medical caregivers with accurate and complete information, and convey your understanding about what is expected of you in regard to your treatment. If you believe you cannot follow through with your treatment, let them know.

  2. Meet your financial obligations as promptly as possible.

  3. Be considerate of the rights of other patients and medical personnel in the control of noise and respect of property at your appointments or in the hospital.

  4. Recognize the reality of risks and limits of the science of medical care and the human fallibility of the health care professional.

  5. Be aware of the health care provider's obligation to be reasonably efficient and equitable in providing care to other patients and the community.

  6. Become knowledgeable about your health care plan.

  7. Report wrong doing and fraud to appropriate resources or legal authorities.

  8. Keep appointments and notify the clinic if unable to do so.

  9. Inform the clinic of the existence of, and any changes to, advance directives.

  10. Notify the clinic of changes in your condition or care situation.


  1. The Coalition for Patient Rights at 1-888-44-PRIVACY (for confidentiality violations).

  2. AIDS Survival Project at 404-874-7926 (for advocacy-related issues).

  3. AIDS Legal Project at 404-614-3969.

  4. The Age Discrimination Act of 1972 prohibits discrimination based on age by any institution or health care provider who accepts Federal funds.

  5. The Americans with Disabilities Act of 1990 (ADA) prohibits discrimination against individuals with real or perceived disabilities in employment, public service, public accommodations, communications and employer-provided health insurance.

  6. The Health Insurance Portability and Accountability Act of 1996 prohibits the exclusion of an individual from the group insurance market for more than twelve months based on a preexisting medical condition.

  7. The Mental Health Parity of 1996 prohibits differential lifetime or annual caps on coverage for physical and mental illness in certain situations.

  8. Chip Rowan, Attorney at Law, at 404-586-2350.

  9. Department of Justice at 1-800-514-0301 (for discrimination of medical care), TTY: 1-800-514-0383.

  10. Georgia AIDS Therapy Information Network at 1-800-551-2728 (to report HIV/AIDS Healthcare Fraud).

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This article was provided by AIDS Survival Project. It is a part of the publication Survival News.
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