For People Living with HIV/AIDS

We provide all enrolled patients with regular examinations by physicians and neuropsychologists who specialize in the problems that HIV can cause. In addition, our research coordinators work closely with research participants and their families to arrange visits and make it all run smoothly. We are happy to share the results of our examinations with your primary care provider, if you would like. We are dedicated to improving the understanding of HIV and thereby the lives of patients living with HIV.

Participation is voluntary, and you can stop at any time. There is no cost, and we reimburse you for your time and expenses for certain procedures. We can provide a copy of the patient consent form for you to read, or you can drop by the office to discuss the study with a research coordinator.

HIV and Organ Donation

HIV enters brain and nervous system tissue soon after a person becomes infected. Some people develop serious complications, either as a direct effect of the HIV itself or as a result of an abnormal immune system. People with HIV/AIDS can develop loss of memory, muscle control, muscle coordination, or intellectual capacity. The causes of these problems are unsolved medical mysteries whose answers will be found only through continued and dedicated research. But research cannot progress without brain and spinal cord tissue donated from HIV infected people.

“...The opportunity to be an organ donor gives me a chance to leave a legacy. It gives me a way to determine how I can pass on with meaning and with dignity.”

Sandy—MHBB organ donor

 

“I lost my child, Kevin, to AIDS. He felt that by deciding to be an organ donor, he was helping some other mother’s child in his or her own fight against AIDS. I feel that way still.”

Lucille—mother of MHBB organ donor

What Happens When You Become a Donor

People often hesitate to sign Organ Donor Consent forms, usually because they have questions, such as:

We are happy to discuss arrangements with you and your loved ones, and will respond with immediate and sensitive attention to ensure successful organ donation.

No, deciding to be a donor does not affect your care in any way. Our goal is to work together with your health care team to ensure you have the best possible care.

No, being an organ donor would not prevent any type of funeral service, open or closed casket, cremation, or burial.

Yes, donations to us can be restricted to the brain only. Your decision is entirely voluntary and you can change your mind at any time.

Most major religious traditions regard organ donation to help others as an act of charity. You may wish to discuss the subject with your personal religious advisor.

Our physicians and nurses can answer these questions, and any others you may have. Feel free to contact a research coordinator for more information. 

It's Your Decision

Deciding to be an organ donor is a very personal decision that must be shaped by your own feelings. For some, this may be a difficult issue to consider, especially in light of all the difficulties inherent in living with HIV. But for others, donation may offer a sense of purpose, a comfort in contributing to the search for knowledge and medical understanding.

If you decide that becoming an organ donor is the right thing for you to do, you should share that decision with your loved ones to ensure that your wishes are carried out.

Should you decide that you are interested in being an organ donor, or would like to discuss the matter further with one of our staff members, we will respond to your inquiry with the utmost confidentiality. Should you decide to enroll, we will treat your participation in the study with the same respect for your privacy.