The Lavender Unit: First Hand Account of Progress
In observance of World AIDS Day, it is important to remember that progress made and the progress still to come.
I was the admitting Resident on the “Lavender Service”. The service, as usual, was full. Twenty rooms, forty beds, forty HIV infected patients with overflow on to other wards. Oddly, the thing I remember the most was the noise. Back then, at least in Cleveland, we used high flow CPAP [Continuous Positive Airway Pressure] to try to coax oxygen into the lungs of people with refractory Pneumocystis, and unlike the CPAP machines of today, those things were loud. Rounding, talking to the other residents, talking to nurses, trying to take a history from the patients was like trying to have a serious conversation on the tarmac behind a 747 about to lift off.
At the main HIV conference 7 months prior, the news was pretty grim -near 100% fatality. Existing treatments gave a short reprieve followed by an inevitable and rapid decline. No major breakthrough in sight. Well, there was a new a class of medication being tested, the protease inhibitors, but after so many disappointments, it was hard to be hopeful.
March 1996 (six months later):
It was my turn on the Lavender Service again. I was tired. I was sad. But mostly, I just wasn’t sure I could take the noise again. Did those CPAP machines help anyone, or were they just false hope? I willed my feet through the big mahogany doors behind which the Lavender Unit was hidden. Silence.
I looked to my left. I looked to my right. I looked at the Census Board. There were three patients on the Lavender Service. Three. I looked at the unit clerk. “Donna….:what happened…where are the patients…why is it so quiet?”
“I dunno” she replied. “Something called Crixivan”. And is it turned out, Donna, was not only succinct, she was right. The protease inhibitors about which I had heard 12 months prior at the retrovirus conference had proved to be the chupacabra, the critical piece of new treatments that this time, would make a difference.
As a physician, I have been involved in the care of people living with HIV since I was a first year medical student volunteering at the Free Clinic of Greater Cleveland in 1990. Today, I am one of a team of 7 medical care providers at Prism Health North Texas caring for over 2400 HIV infected individuals. Research, like the research that made protease based combination therapy possible, has and does provide hope for Prism Health North Texas patients and for all people living with HIV.
Prism Health North Texas is currently conducting 20 clinical trials. These trials focus on HIV, HIV Prevention, Cardiovascular Health, HIV-Associated Neurocognitive Impairment, and Hepatitis C Co-Infection. In many ways, just as NASA’s investments into space research have yielded powerful implications for other fields, such as aeronautics, physics, and biology, so too has research into HIV yielded far ranging benefits. As an example, the current rapid expansion of curative treatment options for Hepatitis C would not be possible without the lessons learned from HIV regarding viral load testing, the role of proteases in viral life cycles, and the role of combination therapy in preventing resistance.
At Prism Health North Texas, we currently have 180 patients enrolled in our clinical trials. Participating gives patients early access to cutting edge medical treatment. Many patients also tell us they feel participating in a study is a way to give back to their community. Studies done at PHNTX have led to the approval of 22 medications for the treatment of HIV – including all of the single-tablet first line regimens that are available today.
While much has been accomplished, there are many developments on the horizon. As a brief synopsis consider the following:
- CRISPR Gene Editing: a technique which uses a bacterial enzyme to scissor HIV DNA out of its hiding places in the human genome, offering a potentially curative therapy as it overcomes the vexing problem which scientists call “the HIV latent reservoir”.
- The use of carbon nanotechnology to create long acting injectable versions of HIV medicines that can be administered every 1-2 months, thus overcoming adherence challenges for many patients.
- Broadly neutralizing antibodies that attack HIV from an immunologic perspective, thus overcoming HIV’s extraordinary ability to develop resistance to small molecule based drugs that function by inhibiting specific enzymes.
- Preventative and therapeutic vaccines that improve upon previous vaccine efforts by attacking HIV in genetically conserved regions that are less prone to mutation thus making it more difficult for the virus to escape the vaccine effects.
Unfortunately, in these times, science and scientists are not being given the trust and recognition that they deserve. Make no mistake, our system of scientific investigation is not perfect, and it is not always all about altruism. But in the case of HIV, I have seen science deliver and continue to deliver on its promises in a way that is very powerful and personal to many of us in this room.
But science does not exist in a vacuum. It is important to remember that in order for this kind of science to flourish, a fundamental shift in human consciousness had first to occur. Let me explain:
If the people infected and affected by HIV had not come together in the beginning to provide basic human services for those suffering, such as food, housing, emotional support, healthcare, and end of life planning,
And if North Texans did not come together to walk through Uptown and Turtle Creek to raise money and awareness for the community of folks living with HIV and dying from AIDS,
And if those same people had not come together to demand that people living with HIV be granted the political rights and the dignity deserved by anyone fighting a deadly disease,
And if the politicians, and the academics, and the intellectuals, and the theologians and the venture capitalists, and the business community had not heard the masses declare that HIV is a worldwide human catastrophe, and that lives of people with HIV really do matter, and that they really are worthy of our attention and investment,
Then there would have been no Lavender Unit,
And there would have been no Donna,
And there would have been no me,
And there would have been no Crixivan and all the other advances to follow.
Thank you for your impact.
Authored by: Dr. Gary Sinclair, Prism Health North Texas medical care provider