My Two Worst Fears Working As An HIV Prevention and Care Specialist are Stigma and TB, reports Tom Mukasa
A month before the AIDS Conference 2018 to be held in Amsterdam and almost 4 decades into HIV relief work what are your two worst fears?
Tom Mukasa:
There are several and how I wish you had asked for three, four, five... I would like to lend myself to the existential criteria that HIV has defined for us both in form of the humans we deal with and the structures within which humans negotiate safer productive and quality livelihoods.
I have these three experiences I want to share with you. One is of a client we got in 2007 in Kawempe, a suburb of Kampala Capital City Authority in Uganda. The community Peer Mobilizers (CPM) we still work with who ensure ARV adherence notified us of two new potential clients. We subsequently processed them and mapped out a best way to get them to access services. This particular one had needs that up to today still remain so vivid. It is amazing how rural it gets as one moves just 10 miles outside Kampala Capital City Authority. This particular person of 42 years, let us call him Tom 1 (for confidentiality) was living in a mud and wattle one room house, with no one providing bedside care, on a family land and his relatives had rejected him once he was diagnosed with HIV. It is, thanks to a very friendly female CPM we had working in the area who managed to convince him that not all people stigmatize those living with HIV. We also reassured him he could get care, revitalized and revived. Fortunately, he regained the optimism and today he is a vendor in both Kawempe and Kampala Capital City Authority. He is very active member of a Positive living Support group.
The second case is of Tom 2 (for confidentiality) a male of 29 years whose family is originally from DR Congo with a branch in Zambia as well. Tom 2 is living with HIV but he has managed to live a healthy life because he comes from a very interconnected community of fisherfolk/ copper miners around Lake Mweru shared by Zambia and Congo. As both a miner and fisherfolk, the strategy of moving from one family compound to another across the borders enabled him to be shielded against stigma. But, it was having a toll on him. He could not exploit the potential of a community organizer we had seen in him. So, we took him through basic sustainability work and life skills training in 2013 and through these skills he started self-help economic clubs in these Zambian towns: Kapiri Mposhi, Chiengi, Kashikishi, Nchelenge, Mwansabombwe, and Mwense. He has others in DR Congo towns of: Pweto, Kilwa and Kasenga. with membership open to young and adults, women and men. Tom 2 has found meaning out of a life he thought was scary. To live with HIV should not be reason for self destruction.
The third case is for Tom 3 (for confidentiality) a Nigerian male of 24 years who has ambitions of joining medical school but whose parents on learning he had acquired HIV disowned him at age 20 years in 2014. This young person is a talented performing artist and it is this that has enabled him thrive in the various cities of Nigeria. We attached him to networks through which he has access to ARVs and we have kept in touch since 2015.
Kampala Gay News:
You sound so, so passionate Tom. Why?
Tom Mukasa:
Yes, I am. HIV became a rite of passage for me. Between 2007 and 2018, we have worked with 227 persons living with HIV who faced some form of near devastating experiences around stigma, suicide and TB in Uganda, South Sudan, Congo, Malawi, Zambia, Tanzania, Kenya, Burundi, Nigeria, Ghana, Camron, Rwanda, Zimbabwe, USA, Somaliland, Eritrea, Ethiopia, Djibouti, RSA, and Sudan.
But, that is at the biomedical side. I have come across and helped provide services to the best of my ability around issues such as: relationship stability and suitability, gender dysphoria, substance use, alcohol abuse, poor hygiene, low to non existent employment skills, money, legal and housing needs. These issues are under-diagnosed and under serviced in Africa. Almost all of activism is blind to the existential needs of people.
Kampala Gay News:
Please elaborate.
Tom Mukasa:
The most devastating thing about HIV is that it breaks down the very survival faces, hands, legs and back of a person as well as the social survival safety nets of many of the countries in Africa. Coupled with poor social infrastructure and an inability to force market-based advantages the ripple effects are vast and catastrophic.
People living with HIV need to have access to the less expensive three in one combination therapy for fighting opportunistic infections and tuberculosis, to which they are particularly susceptible. But, one cannot assume this is possible unless one has also looked into say, the treaties between pharmaceuticals and governments. One has to be strategic in that they are able to provide a solid front that addresses the working modalities of those who fund or provide grants to ensure services are existing in countries like Uganda. Am sure you have heard of such agreements like “pay for delay” agreements, temporary agreements for patent drug monopolies, the tendencies for pharmaceuticals to delay the production of generic drugs, the fact that it is possible for brands of drugs that have been long on the market to be bought or rebranded and then they go through the patenting cycle. All these make for very high drug/medication prices. Life saving drugs become exorbitantly priced. Without the means to negotiate or to put down some payment many people living with HIV lose out.
But, given the geography, political and economical status of most African countries those in the policy and planning sector are faced with issues that require a very different problem-solving approach.
Kampala Gay News:
What do you mean by “the very survival faces, hands, legs and back of a person as well as the social survival safety nets of many the countries in Africa?”
Tom Mukasa:
Most African countries save for Republic of South Africa, Nigeria and Egypt do not have the industrial infrastructure to make their own drugs or medications. They have to rely on importation of these unless they can come up with the agreements, money and a resource pool able to run such industries they will remain at the mercy of industrialized countries and pharmaceutical companies which set the drug prices. The very survival of these countries is at the mercy of the developed countries. Prices need to be low for these governments to be able to import bulk supplies. They have to have the wherewithal to store, stock, move, supply and re-order on time. The prices have to be such that they are available for public sector purchasers operating, in form of government, FBOs, CBOs, NGOs, as well as international initiatives such as the, UNHCR, Red cross, Global Fund to Fight AIDS, Tuberculosis and Malaria, and PEPFAR and World Health Organization. But, most African countries are also faced with geographical catastrophes, food crops fail, in most areas there are those who are uprooted, displaced and end up in camps where there is need for holistic care. In other parts of Africa wars are raging. The youth population is so large that it is overwhelming many African governments unless they act fast. Extended families that used to be the financial credit, shelter of food source when one had needs have crumbled. Now, it is easier for one to abandoned by their own families.
Kampala Gay News:
I sense doom and hope in what you say. What is the best way for countries in Africa?”
Tom Mukasa:
It is doom indeed! To lose over 500,000 people to HIV-associated TB, I,000,000 to malaria and another 500,000 to opportunistic infections, knowing that TB is the leading cause of death among people living with the virus, with about 1 million people living with HIV falling ill with TB, according to WHO is devastating. And over three quarters of all these deaths are in Sub Saharan Africa alone.
The hope is that African countries organize themselves to meet the eligibility criteria set down by UNITAID. UNITAID and CIPLA have cut deals making it possible for say a 3 in one 1 TB pill to be accessed at as low as $ 2.00 for a full month’s dose per person. The pill is a fixed-dose drug combining co-trimoxazole, isoniazid, and vitamin B6. The Co-trimoxazole fights infections like bacterial pneumonia, while isoniazid works to prevent active TB infection. Pyridoxine or vitamin B6 meanwhile, is meant to protect individuals from the long-term use side effects of isoniazid, which numbs a person’s extremities. Because HIV weakens the immune system, it increases the risk of dangerous infections. Patients with a CD4 cell count below 350 cells/mm3 are advised by WHO to take this drug. Because the patients need to take one pill, it will improve adherence to treatment, as patients need only take one pill versus three separate pills to prevent life-threatening common infections. It is also hoped to reduce TB-related deaths among people living with HIV — with the increased uptake of isoniazid, whose availability has been “inconsistent” in low- and middle-income countries, according to experts.
Kampala Gay News:
What is UNITAID?
Tom mukasa:
According to their website, UNITAID uses innovative financing, is the world’s first “solidarity contribution” and aims at innovative impact. it is an advocacy NGO spending about $ 500 million to fight HIV, TB and Malaria. It raises money through innovative financing to shape markets for HIV/AIDS, malaria and tuberculosis in low-income countries. The bulk of UNITAID’s resources come from a small levy on airline tickets in several countries, while the rest is provided primarily by multi-year contributions from governments. This long-term and predictable stream of funding allows UNITAID to provide incentives for manufacturers to supply quality public health products at a reduced price and bring new formulations to market. UNITAID complements the work of other global health agencies by targeting underserved markets such as pediatric HIV treatments or cutting-edge diagnostic tools. Funds are then strategically channelled to correct shortcomings in these markets through UNITAID’s implementers on the ground. Implementers ensure that those in need have access to improved and affordable products. They then report to UNITAID on the public health impact of their actions and use of the funds. UNITAID was established in 2006 by the governments of Brazil, Chile, France, Norway and the United Kingdom. Today it is backed by a formidable “North-South” membership, including Cyprus, Korea, Luxembourg, Spain and the Bill & Melinda Gates Foundation alongside Cameroon, Congo, Guinea, Madagascar, Mali, Mauritius and Niger. Civil society groups also govern UNITAID, giving a voice to non-governmental organizations and communities living with HIV, malaria and tuberculosis.
Kampala Gay News:
So, what are your two fears?
Tom Mukasa:
My two worst fears working as an HIV Prevention and Care Specialist are stigma and TB. Stigma makes people hide and TB is contagious. This means it can spread to so many other people and across state boundaries. It means travel restrictions may have to be imposed and this is so devastating to exchanges of ideas, money, expertise, goods and services.
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