Hello, my name is Stephen Watiti. I am 72 years old and live in Uganda. I am a retired medical doctor and a person living with HIV. With hind sight, I have lived with the infection for the last 40 years. As a result, in 1999 I had advanced HIV disease and suffered from Multi-drug resistant TB (MDR-TB), cancer (Kaposi’s sarcoma) and cryptococcal meningitis at the same time. I was not on antiretroviral therapy at that time because it was not available in my country. Luckily, palliative care was available and I was referred for the service, because I was experiencing a lot of pain and suffering.
At that time all I knew about palliative care was that it was end of life care. Because of that, my family and I myself resisted the move to put on palliative care. However, I was counselled by a team of palliative care nurses, and accepted to take the morphine that had been prescribed for me because of the severe headache I had. With the pain controlled, I was able to eat and take the anti-TB medicine and later antiretroviral drugs (ARVs), and slowly improved. When the pain was controlled, the morphine dose was reduced and eventually stopped. I did not get addicted to the medicine, which was my greatest worry.
I am currently not on palliative care; however, I have chosen to use my lived experience to advocate for availability of palliative care for all who need it to help alleviate the rampant health-related suffering experienced, especially by people with HIV who are prone to getting severe opportunistic diseases like what I had. Many others such as those with non-communicable diseases (NCDs) like: diabetes, high blood pressure and cancer need palliative; because in my country, people with NCDs often present late, with end-stage disease and many are put on futile expensive treatments; instead of being offered palliative care, because it is not readily available.
I also use my lived experience to “de-stigmatise” palliative care; by challenging popular perceptions and attitudes, so that it is seen as a continuum of care and a component of universal health coverage (UHC), together with: health promotion, disease prevention, curative services and rehabilitation.
Palliative Care Voices 