- To advance understanding of HIV and its effects on the brain and nervous system.
- A collaboration between people living with HIV and scientists, with the primary purpose of providing a future benefit to all those infected with HIV.
- Established in 1998 by a grant from the National Institutes of Health, the MHBB is based at Icahn School of Medicine in New York City, and is a member of the National NeuroAIDS Tissue Consortium. It has an ongoing clinical study, and acts as a resource of detailed medical information linked to a biorepository of tissues and fluids for research use by the scientific community. It provides a means by which people living with HIV can be engaged in the struggle to improve our knowledge about HIV infection and the damage it causes to the body.
We provide all enrolled patients with regular examinations by Physicians and Neuropsychologists who specialize in the problems that HIV can cause. In addition the staff of nurse coordinators work closely with research participants and their families to arrange visits and make it all run smoothly. If you allow us, we will communicate the results of our examinations to your primary care provider. The MHBB is dedicated to improving the understanding of HIV and thereby the lives of patients living with HIV.
Participation is voluntary and can be stopped at any time. There is no cost to participants and you will be reimbursed for time and expense for certain procedures. A copy of the patient consent form can be obtained by contacting us. Information can be mailed to you, or you can drop by the office any time to discuss the study with a research coordinator.
Importance of Organ Donation in HIV Research
HIV enters a person's brain and nervous system tissue soon after that person becomes infected. In some people this can eventually lead to serious complications, either as a direct effect of the HIV itself, or as a result of a weakened immune system. Problems can develop, such as loss of memory, muscle control, muscle coordination or intellectual capacity. These problems are unsolved medical mysteries whose answers will be found only through continued and dedicated research. But research is held back by a severe shortage of the most important contribution that can be made: brain and spinal cord tissue donated from HIV infected people.
Individuals infected with HIV may have heard that they cannot be organ donors (for transplant) because of their infection. This is true, yet it is still possible to be an organ donor to help research in the search for a better understanding of HIV and in the development of improved treatments for people living with HIV in the future.
What Happens When You Become a Donor
People often hesitate to sign Organ Donor consents, usually because they have questions, such as:
Q: What will happen?
A: The MHBB will discuss arrangements with you and your loved ones and will respond with immediate and sensitive attention to insure successful organ donation.
Q: Will it affect my medical care?
A: 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.
Q: Will there be any disfigurement?
A: No. Being an organ donor would not prevent any type of funeral service, open or closed casket, cremation or burial.
Q: Can I restrict the donation?
A: Yes. Donations to the MHBB can be restricted to the brain only. Your decision is entirely voluntary and can be revoked at any time.
Q: Does my faith permit it?
A: 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.
These questions, and any others you may have, can be answered in greater detail by MHBB physicians and nurses. Feel free to contact a research coordinator for more information.
Making the Decision to Become a Donor
Deciding to be an organ donor is a very personal decision that must be shaped by your own feelings of what you want to have done when you die. For some, this may be a difficult issue to consider, especially in light of all the difficulties already experienced while living with HIV. But for others, donation may offer a sense of purpose. It may offer comfort in knowing that the search for knowledge and medical understanding will carry on.
If you decide it is the right thing for you to do, it is a decision that you should share with your loved ones to insure that your wishes are known and carried out.
Should you decide that you are interested in being an organ donor, or would like to discuss the matter further with an MHBB staff member, please contact us. Our staff will respond to your inquiry with the utmost confidentiality. Should you decide to enroll, your participation in the study will also be treated with same respect for your privacy.
What Our Participants Say
"..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
GCO #98-477, IRB approved through 3/31/08