Lamont Valentin has lived with HIV since he was born nearly 30 years ago. After his mother died at age 6, he was placed in the foster care system and had only intermittent contact with his family members. As he grew up, Valentin remembers hearing from different adults that he was so sick he probably never would make it to adulthood, much less have a family of his own.
"In my teen years I wasn't worried much about my future," said Valentin. "But the older I got the more reality set in that 'Oh I might make it.'"
Today Valentin has his HIV under control with an undetectable viral load and stable t-cell count. He's married and a father to 18-month-old Mason, which are two things he never thought possible when he was growing up. Neither Valentin's wife nor his son is HIV positive.
HIV Hot Spots are Stark Reminder of Deadly Disease
However, at age 29 Valentin is still sick, possibly sicker than he's ever been before.
As a child, Valentin had numerous cases of pneumonia related to his HIV that irreparably damaged his lungs. At age 27 just before the birth of his son, he was suddenly hospitalized with chronic obstructive pulmonary disease and pulmonary hypertension.
"Everything happened really fast," remembered Valentin. "I'm just like damn I might not see my son's first birthday."
In the past 18 months, as Mason has grown taller and taken his first steps, Valentin has remained at home with his son tethered to a 30-foot-long green oxygen tube that connects to an oxygen compressor. If he wants to go further than the tube allows, he has to transfer to a portable oxygen container. It's a feat that has become impossible for him without the help of his home health aide or his wife.
Without a lung transplant, Valentin's doctors have told him he likely won't survive past the next few years.
Although he has worked with his doctors and social workers to get try to get on an organ transplant list in New York, he has been unsuccessful. Multiple times his pulmonologist has told him that no New York transplant center will take him due to his HIV status.
However a new law passed on Thursday may help Valentin and other potential HIV positive transplant patients get access to vital organs.
The HOPE act signed by President Barack Obama on Thursday will allow HIV positive organs to be used in organ transplants by HIV positive recipients, creating a larger pool of organs for transplants. The law changes part of the language of the Organ Transplant Amendments Act of 1988, written at the height of the AIDS scare, that federally banned HIV positive people from becoming organ donors.
Until the HOPE act was signed, HIV and AIDS remained the only conditions that federally banned a person from being an organ donor.
Dr. Dorry Segev, a transplant surgeon at Johns Hopkins Medical Center, worked to help get the HOPE act passed and said the law could help hundreds or potentially thousands of HIV positive people in need of organ transplants.
"This is also great news for anyone on a transplant list, because the more organs we have for transplantation, the more lives will be saved," said Segev. "We estimated that there are hundreds of organs that could be used for HIV-positive patients who need them; the more we learn about this practice, the more those transplants will be possible."
Segev said it is difficult to tell how many HIV positive people are in need of an organ donation, since many people, such as Valentin, are not considered viable transplant candidates because of their HIV status.
The new law also does not mean that HIV positive organ transplants will suddenly become commonplace. Initially the law directs the Department of Health and Human Services and the Organ Procurement Transplant Network to develop and institute standards for research on HIV-positive organ transplantation. After the research is completed and if the results the secretary for the Department of Health and Human Services can permit positive-to-positive organ transplantation.
Dr. Peter Stock, a professor of surgery and transplant surgeon at the University of California San Francisco, says the law is necessary since it will allow HIV positive patients to wait less time for an organ transplant and possibly allow others to get on the transplant waiting list in the first place.
"Right now in San Francisco if you're waiting for a kidney transplant you're waiting eight years. The organ shortage is eight years [long,]" said Stock, who explained that by the time a person is sick enough to get an organ they are often already on dialysis. "It turns out that HIV patients can't [survive to] there."
Stock, who ran the 2003 National Institute of Health clinical trial that proved HIV patients could successfully receive kidney transplants and survive post-surgery, is astonished at how far HIV-positive organ transplantation has come in the last decade.
"Who would have thought we would go from prohibiting transplants to using HIV positive donors," in just over a decade, said Stock. "It's wild."
Stock said it's clear that for many patients HIV has turned into a chronic disease that can be managed by medication and believes that the condition should not immediately bar people from being considered viable transplant candidates.
While Stock admits that more research has to be done, he says the new law will provide potentially thousands of people with the ability to live longer, healthier lives, even those not HIV positive, by allowing more organs into the organ transplant pool.
"The one thing it does is bring to attention the organ shortage," said Stock. "Waiting eight years for an organ…for a lot of people it's a desperate situation. Any opportunity to increase the organ pool and increase the need in the donor pool is fortuitous."
Stock said research would be crucial before large scale HIV positive organ donation occurs. One particular concern is that the kidney can be reservoir for HIV and there's a chance that a person could contract a different strain of the virus. However Stock said modern HIV medications will likely be able to keep nearly all strains of HIV in check even in transplanted patients.
For Valentin, the law has made him more optimistic about his future. Additionally in the last three weeks he received his first good news about getting on a transplant list.
Since mid-October Valentin has received offers from doctors in Boston, San Francisco and Kentucky, to conduct tests to see if he is a viable candidate for a transplant. If his t-cell count is stable and his viral load is low enough, Valentin believes they will put him on a transplant waitlist.
However, without a support network in either place and without money to cover his living expenses or home health aide in the different states, Valentin said moving for weeks or months might be prohibitively expensive. Valentin is hoping with the HOPE act's passage into law a transplant center in New York will reconsider performing the surgery so he could remain in the city with his wife and son.
Valentin's friends have also set up an online fund, accessible here, in the hopes they can raise money to help cover the medical and moving expenses associated with staying in a different state while undergoing tests for a transplant surgery.
"I feel like my whole life I've been working to live," said Valentin. "Some people work hard to be a doctor or lawyer. All my life, all I can remember was the kind of work I wanted to do or be is just to be alive."