The HIV journey: Have we learnt from and celebrated the legacy of our heroes?

Categories: Care.

The decision by the President Bush administration and the then constituted PEPFAR team to fund and support the role out of antiretroviral medications in Africa in 2003 was such a great initiative that has had a monumental impact in Africa and globally. This response came at a time when families, the religious communities, civil society organizations and the health systems were stretched to the limit by the burden of the dead, the very sick, the dying and the orphans. At the family level apart from the sick and dying, children and their elderly grandmothers bore the brunt of the stigma, care burden, psychological and social impact of the disease.

This PEPFAR response came at a time when small initiatives had been started in some countries like Uganda where privately funded individuals were paying for the ARVs with their entire livelihood. This was in no way sustainable and in the end it impoverished families for a generation. I knew a man who said that instead of spending his savings on ARVs he would rather leave the money for his two daughters to continue in school.

While I worked at Mildmay International in Uganda, a company in UK called Keymed offered slots for twelve children to start the medications and also have school fees paid. The process to choose the 12 out of nearly 6000 children brought an uproar as every staff member knew at least a dozen different children who should be first on the list. In the end the names were chosen by a lottery where all names of children were randomly chosen from a basket. The twelve went on to recover and also go to school and are now adults. Many of those who were not selected received care but some eventually died prematurely.

In 2003 I had a patient who said that: “doctor if only I could live for another 2 years to see my daughter graduate from Nursing School so that she could look after her sisters and brothers when I am dead”. That was her only wish. She was later started on ARVs and did not only live for two years but has also had an opportunity to see not only her children but grandchildren.

At the level of the health system the massive response to HIV through PEPFAR has resulted in initiatives. For example the response has seen the development and improvement of human resources for health in terms of skills and numbers as patients and community care givers have been brought on board to support care giving.  Health care infrastructure including laboratories, research systems, training infrastructure and programmes have all been positively impacted.

Infrastructure and systems for prevention and management of specific disease such as TB, Hepatitis B, cervical cancer and Kaposi Sarcoma have also been established.

Because of these interventions several man-hours in health sector and the general world of work have been saved as those who get better return to work while the very ill receive the attention they need.

Households and families have learnt how to support chronic and palliative care, use appropriate and affordable technology for disease prevention and safe water use and also strengthened the family response to ill-health.

As we move to the future and the HIV epidemic matures, there is still need to focus on key populations such as the elderly, the children, university students, mobile populations such as the long-distance drivers, commercial sex workers, gay and lesbian persons, the armies, prisoners,  and fishing communities, not forgetting the married couples and child bearing women. We can only ensure equitable access to HIV services and wider health services and justice if these key populations have equal access to health services to eradicate the pockets of high HIV prevalence rates. Lessons from the HIV response are also speak to us about the urgent need for integrated services, given the interplay and influence between infectious and non-communicable diseases. This response also highlights the value of a multi-sectoral and inter-disciplinary approaches that are still valuable for future interventions.

In all this our heroes are very visible and include pioneers,  architects and builders of PEPFAR, other western governments  contributing to the Global Fund for HIV/TB/Malaria, HIV patients, civil society organizations, activists and researchers who have continually provided the evidence for new approaches as well as training institutions that have responded appropriately.

It is also worth celebrating the private sector that funds the care of the workers as well as insurance companies that have developed health care policies that include HIV.

The palliative care and homecare givers who have focused on the patient and the family as well as creating an environment for adherence support should also be celebrated. As we look to the future, an integrated approach to disease prevention and care needs to be strengthened to ensure that systems can handle similar challenges.

As we look to the future and also strategize for universal health coverage governments in Africa and across the world opt to prioritize the funding of health systems including palliative care while at the same time aiming to reduce loss and wastage of resources so that the suffering of the 1980s and 1990s is never seen again. We need to take the right decisions at the right time.




Leave a Reply

Your email address will not be published. Required fields are marked *