Perhaps it is my age or the increasing grey in my hair, but I realized last week that HIV has been around since I was a medical student!
That realization caused me to reflect on those 30 years and my experiences with HIV/AIDs.
1. The first person with HIV that I saw in Adelaide in the 80s was a gay man as was consistent with the early reports. He died quickly of overwhelming lung infection. It was not long before AIDs and the HIV began its non-discriminating spread throughout the globe.
2. I recall visiting the National Cancer Center in Uganda in 1990, and seeing men there with Kaposi’s Sarcoma. The Oncologists told me that they could identify those associated with HIV by the presence of mucosal lesions, not something they had seen with endemic KS.
3. On arriving in the USA in 1994, I visited the Memorial Sloan Kettering Pain Service for a few days. Palliative care issues with AIDS patients made up a lot of their work and patients were continuing to die of this disease, often after living with significant morbidity including pain.
4. The stigma associated with this disease continued to be significant in the 90s as young men returned to Madison, to die of this disease while receiving hospice services. I recall home visits with a number of these patients and their families, one in particular where his mother was caring for him in his dying days while the rest of the family still denied that he had the disease.
5. Anti-retroviral therapy was a huge breakthrough but not without its costs. I have recently cared for a man who used ARVs at the time of the original trials. He himself did not qualify for the trials (his counts were too high), but he shared his partner’s trial medications, until the partner died from an infection. Once these were approved he continued ARV for many years and as a result lived with a significant neuropathic pain syndrome that requiring ongoing opioid therapy until his own death.
6. As the disease spread through low and middle income countries, especially in sub-saharan Africa, the lack of organized health care systems created great strain on fledgling hospice and palliative care programs, such as Meru, Kenya. This strain, to me, was created by PEPFAR’s strong focus on ARVs with everything else in the treatment spectrum being placed under the umbrella of “palliative care.” This is not negating the value of PEPFAR, just a statement reinforcing the current goal of building good health care systems.
7. I attended a WHO workshop, supported by the Ford Foundation and Altarum Institute on “Decent Care in Palliative Care” in Tunisia in early 2009. Among the attendees from around the world, were both people living with HIV as well as those providing care for them. Coming from my home in liberal Madison,Wisconsin, I was concerned by the ongoing degree of stigmatization reported by those living with HIV. Daily, our colleagues from around the world shared stories of this stigma and shared the importance of support and advocacy groups that had been organized, often at great risk to their founders. Equally many of these people, who were receiving ARVs, were totally unaware of the lack of health care services, including palliative care and opioids, for the many cancer patients in their own countries. I continue to believe that that we need to stress the value of decency in the health care we provide.
8. As we move forward with recognizing palliative care and pain relief as human rights, there is not a competition between HIV and Cancer and other non-communicable diseases. We need palliative care for all. It is the decent thing to do!
Appreciate any thoughts you have on these reflections or your own!