“It hurts”: when Uganda runs short of HIV drugs

For Bashil Masiga, 23, who was born with HIV and relies on antiretrovirals to live a healthy and productive life, going to his local pharmacy to find nothing but painkillers is terrifying.

For Bashil Masiga, 23, who was born with HIV and relies on antiretrovirals to live a healthy and productive life, going to his local pharmacy to find nothing but painkillers is terrifying.

“It hurts,” he says. “All I thought of was death, because I grew up knowing that ARVs [antiretrovirals] are my life. Without them, no life.”

Masiga is an HIV peer educator in Bugiri District, Uganda and unfortunately his story is not unusual as Uganda is well known for having regular stock outs of ARVS, despite the fact it is a high-burden country with 1.5 million people living with HIV (UNAIDS). Although the number of people on treatment is increasing, the latest estimates from 2013 show more than 60 percent of adults living with HIV are still not receiving ARVs (AVERT).

Why the stock outs?

Raymond Kwesiga is a psychosocial officer who coordinates activities for people living with HIV at AIDS Information Centre (AIC) in Kampala.

He says: “Poor planning from health centres to the top is one of the major reasons why we are facing ARV stock outs in Uganda. At health centre 111, a big number of people access treatment. Now we provide treatment to eliminate mother-to-child transmission [of HIV] and for people whose CD4 counts are 500, previously it was for a CD4 count of 300. So this has increased the number of people who access treatment yet the stock given is very small compared to the number of people in need.”

Kwesiga also observed that health centres supplied by government run National Medical Stores (NMS) regularly run out of stock, yet health centres supplied by joint medical stores like AIC, who are private suppliers, do not.

How stock outs affect people

When stock outs occur, service providers dispense advice and drugs that are available. At Bugiri health centre, service providers refer clients to other facilities where they can access treatment. Previously, people faced the challenge of transport over long distances to their facilities but now it is worse. Many facilities in Bugiri District run out of stock and can only refer people to facilities in Kampala, which is very far away.

Fear of stock outs and anxiety over travelling long distances are making people weaker day-by-day. People are tired of collecting treatment every week. People are worried about dying because of lack of drugs. This is in addition to the stresses of ARV side effects, and the challenges of taking numerous tablets on a daily basis. Drastically, this leads some people to abandon their ARV regime. BJ (name abbreviated to protect identity) experienced stock outs at her local facility and feels she has no alternative but to stop taking treatment.

BJ explains: “I went to my doctor for the first time and found no tablets but I was told to go back the following day which I did. Thank God this time round I got treatment that day. Then another day I went back and again there was no treatment. I am sick of this situation of ‘on and off’ treatment I think it is better that I stop taking treatment and wait for my day.”

What can be done?

The UNAIDS 90-90-90 treatment target strategy aims to reduce the global number of new HIV infections to 500,000 per year by 2020 by ensuring that 90 percent of all people living with HIV will know their status; 90 percent of all people will receive sustained antiretroviral therapy; and 90 percent of all people receiving antiretroviral therapy will have viral suppression. But with more people potentially taking ARVs, there is pressure on the health system to ensure availability of quality medication.

For Uganda, meeting treatment targets amid ongoing ARV stock outs will be a major challenge.

Youth sexual and reproductive health project

Link Up is an ambitious project in several countries, including Uganda, and it promotes the sexual and reproductive health and rights of young people.

As part of Link Up, young people from Namutumba and Bugiri districts are taking matters into their own hands. Some have come up with new actions to help them buy treatment for themselves and also for others. JM (name abbreviated to protect identity) is a sex worker in Bugiri and she had the idea of creating a saving group made of seven members. Each of them is required to save 1,000 Ugandan shillings (US$ 0.28) per day and this money helps them to pay for treatment and care from private hospitals if they are not able to access it from public health facilities.

Allen Kyendikuwa is a persuasive advocate in Link Up Uganda and encourages people to come forward for HIV, CD4 count and viral load testing in order to maintain their health. Kyendikuwa supports advocacy to ensure greater access to ARVs and feels that creating and promoting demand for these essential services is an important part of this advocacy.

Advocating for people’s rights to access life-saving treatment is vital. CYSRA Uganda – a youth-led organisation on sexual and reproductive health and rights and HIV – has been mobilising young people to demand integrated health services for young people.

Charles Bwire, an advocate for CYSRA Uganda, said: “Lobbying the government and partnerships among health-associated organisations increases resources, hence overcoming ARV stock outs.”

Although sometimes it can seem like an impossible task, it’s good to remember Nelson Mandela’s wise words: “It’s impossible until it’s done.”

Read Angela’s story: How I ended up pregnant and with HIV at 15

COMMENTS

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    Great piece Miriam! They should also find a way of mobilizing to meet stakeholders in the community to assist them with funds to seeks alternative sources of treatment. But am curious though as to why the privately run centers never run short of supplies while the government run centers run out.