Carol Nyirenda – executive director of the Community Initiative for Tuberculosis (TB), HIV/AIDS and Malaria plus related diseases – has been living with HIV for several years and is a tuberculosis survivor. A Zambian native, her advocacy work initially in TB created the foundation for her career in national and global activism that now stretches beyond HIV, TB and malaria. Nyirenda serves on the Stop TB Partnership’s New Diagnostics Working Group as a community representative, and is a board member representing communities of people living with TB, HIV and malaria for UNITAID, where she has successfully lobbied for resources for drug resistant TB diagnostics, according to the Treatment Advocacy and Literacy Campaign where Nyirenda used to work.
She sat down with Science Speaks while on her latest trip to the U.S. and discussed access to treatment and care services in Zambia, how critical Global Fund investment is to these services in her country and what has changed since the corruption allegations surfaced in 2010.
When did you find out about your HIV status?
I found out in 2003 that I had HIV, though I had been having clinical signs since 2001 after my husband died. At that time there wasn’t clear information about what to look out for.
After being married for 13 years and not having ever strayed from our marital bed – coupled with the fact that we used condoms 90 percent of the time also as contraception for family planning – I didn’t have reason to think I was HIV positive. After my husband died I had tuberculosis (TB), malaria, kaposi’s sarcoma [a type of cancer], and other opportunistic infections. Had I known that I had HIV earlier, it would have been easier, especially in regards to the TB diagnosis, which took a long time and a lot of resources, and the treatment for the cancer.
It took about six months to diagnose the TB. I had extra pulmonary TB. I had a very dry cough and was not producing sputum which I could give to the lab for testing and it couldn’t diagnose with an x-ray machine. My brother was a doctor at a private hospital at the time so he paid for my TB treatment. It was me, my family and my brother that put the resources together and started buying the anti-HIV medication I needed to survive, and I started my initial treatment at the private hospital.
Eventually we ran out of money so I had to stop taking medication for a while. Because of the cancer that I had, I wasn’t responding to treatment. I was on a first-line regimen then.
My family reached out to a family friend from our church that was living in South Africa and was helping members of our church. He had come up with this organization in South Africa that was supporting people from our church that had health problems including HIV. So the organization started paying for my treatment – and finally my cancer started going into remission. The cancer is now in remission – I haven’t had a problem in the last six years.
After all of this, I couldn’t work. I have two children and I had to look after them. After the medicines from South Africa stopped, I found out that the country had free antiretrovirals (ARVs) funded by PEPFAR [the U.S. President’s Emergency Plan for AIDS Relief] and I managed to enroll in the free antiretroviral therapy (ART) roll-out scheme. I also joined a support group at the same clinic that also offers free clinical visits, medication, lab tests, and everything with regards to the management of one’s HIV status is free. Most of the people in the group were semi-literate and we needed to raise money for activities. Since I had worked prior to my HIV diagnosis as a secretary and had knowledge on resource mobilization, I helped writing proposals, one of which got funded and we carried out activities as people living with HIV. I then found out that there was a call for nominations to attend an AIDS conference in Canada. I responded to the call to apply for a sponsorship to attend the International AIDS Conference in Toronto and fortunately got a full scholarship. The conference was big and really overwhelming, but there I saw what the advocacy community was doing and that I could contribute to the cause in my own little way.
I continued advocacy at the country level – I joined an activist organization in Zambia called the Treatment Advocacy and Literacy Campaign. From there I started getting training in advocacy and that is where I found out there were other calls on the internet for representatives of those living with HIV at the global level. The first one I applied to was for those who are affected by TB and malaria through UNITAID. From that I gained exposure to the international community. After a few years, I found out they were looking for someone from affected communities to join the Global Fund Board. I applied and I was accepted.
I started off with just HIV treatment advocacy – I now do TB advocacy as well. It’s actually treatment, care and support and respect for the human rights of people living with HIV – including stigma reduction – and prevention (re-infection) among people with HIV. It is so important to keep reemphasizing prevention among those already infected with HIV, to prevent re-infection and also to prevent infection of those in the world who are not infected.
How critical is investment by the Global Fund to Fight AIDS, TB and Malaria to the success of HIV and TB programs in Zambia?
Very critical. Because for one, though there is the issue of treatment and it is very important – treatment cannot go alone. There’s also empowering the people with HIV and those living with TB and the general community to enable them to take part in the management of their illness. If people don’t have information, accurate information, then any interventions you implement will not work well. So for me information dissemination is really important. Global Fund helps to fund programs that carry out information, education and communication and other activities in relation to HIV, TB and malaria.
Secondly, the other important aspect for me is how the Global Fund puts the affected communities at the center of all of its activities. The fact that we, people living with HIV, affected by TB and malaria, have a seat on the board of the Global Fund with full voting rights like any other board member, donor or whoever, is amazing. We as affected communities bring to the table this unique perspective that all the other board members do not have. We represent the affected constituency which all the work of the Global Fund revolves around.
At the national level, civil society organizations are also able to be principal recipients of donations from the Fund. Zambia has two civil society principal recipients for Global Fund resources. At CITAM, the Community Initiative for people living with HIV, TB and malaria where I work, we started our office with funding from Global Fund money that we apply for and receive as sub-recipients. We in turn use the money to support programs of those who need care and support on the ground.
In 2010 some $137 million funds were blocked from disbursement to Zambia because of corruption allegations. What has happened since then? What steps has Zambia taken steps to address this issue?
When this misappropriation of funds happened in country, Zambia reported itself through the Global Fund’s country coordinating mechanism (CCM). So the CCM is the one that identified the issue, got in touch with the Global Fund secretariat in Geneva informing them that there were some problems with a particular principal recipient.
What has happened now is that those who were involved in the misappropriation of funds were arrested, some of the cases are still in court and the government has started paying back the money. The bulk of the money has been paid back. There was also the issue with the fact that because the money was misappropriated at the Ministry of Health (MOH), the MOH is no longer a principal recipient – it’s now a sub recipient. The United Nations Development Program is now the one receiving the money and also helping build the capacity of MOH so they can take over.
These interventions that have been put in place to ensure that this doesn’t happen again.
Funding into Zambia had slowed down from the Global Fund. Some of the funding that was withheld after the misappropriation is trickling in now, but a lot of programs also were cut down and closed because of that, and it has had a big impact on the programs on the ground. It didn’t affect treatment per se – ARVs were still made available, but other programs that are part of the disbursement of the drugs, care and support of people living with HIV suffered.
What’s going on with HIV and TB co-infection in your country?
TB is a growing problem in Zambia. We have high rates of HIV/TB co-infection. The rate is about between 60 and 70 percent of people with HIV have TB, and vice versa, but it is not the worst country affected in sub-Saharan Africa.
The country is making efforts to integrate HIV and TB services, but we are not there yet. Zambia has what is called the TB HIV Joint Collaborative Body where stakeholders from the TB and HIV communities meet and discuss integration of services. So at the national level you see there are tools that were developed that should make service integration feasible, but sometimes when you go to the ground, systems that should work are not working as anticipated.
The effort is there – I’m not sure what can be done to create a balance with the efforts the authorities are making and the impact it should be having on the ground. But as civil society we are talking about it a lot and we are still increasing the information we are distributing about co-infection.
Is the Gene Xpert rapid TB diagnostic machine making its way to clinics there?
I know there are one or two machines in the country, one that is operational and as activists we are pushing to get more. You realize that the affected communities are usually not aware of the existence of such equipment and so we create awareness so people will demand it. It’s a good tool and it is definitely needed.
Is there broad access to treatment in Zambia? What is the CD4 cut off point?
The ART free roll-out scheme is country wide. The CD4 cut off is at 350 now – it used to be at 200 but we moved up sometime around 2009 or 2010. It is mostly those below 350 that get treatment now unless one has other underlying infections. We still have a lot of people who are queuing and waiting to get on treatment. In 2009 14.3 percent of Zambia’s estimated 12.9 million population was infected with HIV. There are more than 300,000 people on treatment currently, but I do not have the exact number of those eligible but still waiting to access life-saving treatment.
Are HIV-infected individuals with TB disease being fast-tracked onto antiretroviral therapy (ART)?
Now, yes, people with TB are being fast-tracked to receive ART as part of the TB/HIV co-infection program.
In the clinics, patients also are being sensitized to the issue of triaging so they are aware of this as an infection control strategy, but that this is for their own good and the good of those around them. There is a real push for people with TB to start ART. The referral systems are there. If you present with TB and have signs of HIV you are referred for diagnosis and possible HIV treatment initiation and vice versa.
What are the prospects for Zambia managing its own HIV program in the near term?
I know it can be done but at the moment it is still far away. Civil society is pushing for the government to increase its domestic health funding. At a CSO meeting a few weeks ago, we were discussing a proposal that a tax should be levied on certain products and the revenue put toward health – a part of the tax revenue would pay for ART specifically in order to ensure sustainability. We plan to communicate this plan to the relevant authorities once we are ready.