MUNICH – People living with HIV and non-communicable diseases (NCDs) often have to see different health providers for each condition, wait too long for their NCDs to be diagnosed and take medication that can interact with one another.

In addition, most were unaware that their HIV status increased their risk of some NCDs – and some health workers did not know how to manage their conditions. This is according to a collection of interviews with people living with HIV and NCDs launched in advance of the AIDS 2024 conference.

A Case for Integration: A Collection of Lived Experiences of People Living with NCDs and HIV has been published as part of the NCD Alliance’s “Our Views, Our Voices” initiative, dedicated to promoting the meaningful involvement of people living with NCDs in the NCD response.

Kenyan Domitilah Anyango Okeymo, 50, lives with HIV and hypertension. When she moved to a rural part of the country, she was told she had to go to two different clinics for her two conditions.

“Here, they have an HIV clinic, but I have to go to another facility for hypertension and then explain everything there again. It is not comfortable having to explain to different people and disclose my status each time. So, I check my blood pressure myself,” said Okeymo.

Serah Mbovi Makau, 58, has HIV, hypertension and diabetes.  Diagnosed with HIV back in 1996, Kenyan Makau shunned health care for 10 years until TB and other opportunistic infections forced her to seek help.

She first took TB treatment, then antiretroviral (ARVs) medicine in 2006.

‘All was fine until 2018 when I discovered that I was hypertensive. I went to a regular clinic, where they tested my blood pressure and, realising that it was high, they put me on medication,” said Makau.

“Now I had another medication, which I had to take daily, another appointment and another clinician I had to see. Taking both medications was not easy. The timings of the medication didn’t match. I also felt that each clinician had their own interest – HIV only or hypertension only.”

Makau wishes that her conditions “can be treated and monitored in one clinic, with one clinician, and one appointment”. 

“I want to be treated holistically, and to be given information about these conditions and my medications so that I am empowered to manage them,” she added.

Mental health struggles

Many people living with HIV struggle with mental health, yet most are unaware that their HIV status makes them more vulnerable. 

Zambian Luthando was infected with HIV at birth but only found out at the age of 14 when she and her friends decided to have HIV tests.

“When the results came, my friends were given their status there and then. But the counsellor told me that they needed my mother to be present.”

When she returned with her mother, the counsellor told her that she was HIV positive. The and asked if she was sexually active.

“I didn’t know about mother-to-child transmission. At this time my mother disclosed her status to me and my older sister,” said Luthando.

Once she had completed high school, “the reality of my status hit me”, says Luthando, who is now 25. 

“Even if I seemed okay on the outside, inside I wasn’t okay. I would break down and cry, I didn’t talk to my mum some days and I became rude in our conversations. It took connections with people for me to make a change and come to terms with my status,” she says, adding that a support group and counsellor helped her.

“I would like to see all clinics give information to patients, in their languages, about mental health support. I also want to see healthcare providers asking their patients more questions about how they are coping and what their needs are. They should be trained to offer this support and information on mental health,” she stresses.

Lack of diagnosis

A number of people with HIV also reported that their other conditions were not promptly diagnosed by healthcare workers at HIV clinics.

Indian Mona Balani, 48, lives with HIV and hypertension, but feels that her health promblems have often been overlooked because health workers assume that they are all related to HIV.

“Every time I’ve sought treatment for health issues other than HIV, discrimination has been my constant companion,” recounts Balani.

“Stigma and discrimination contributed to further delay in diagnosing my extra-pulmonary TB in the abdomen, pushing me close to death,” she said.

“Beyond my own story, other people living with co-morbid conditions in my community also face similar challenges, including the fact that most of the NCDs are left undiagnosed, untreated or inadequately treated due to stigma and discrimination associated with HIV and TB,” Balani added.

“With my experience, I would like to emphasise the need for HIV-NCD service delivery integration.”

Her story is echoed by that of Ashleigh Bezuidenhout, who lives in South Africa.

“For three years, between 2018 and 2021, I suffered severe stomach cramps and constipation. Each time I told my [HIV] doctor, I was just given laxative medication and sent home,” says Bezuidenhout.

“The focus was on treating us for HIV and not on our overall health. It broke me all the time leaving the clinic or hospital and always being told that there was nothing serious, when each X-ray or scan showed lumps on my ovaries and all I got was numerous types of pain meds which helped just for a short time.”

Finally, in February 2021, she went to hospital after her HIV clinic had once again fobbed her off with laxatives.

“A scan detected a mass and the doctors had to put a draining tube through my nose to help relieve the swelling and pain in my stomach,” says Bezuidenhout.

“I needed an emergency operation which took place a few days later. They removed a big mass the size of an orange, 12 small tumours and 30cm of my small colon which was badly infected. I tested positive for cancer of the colon, and ended up with a stomah bag, which I still have today. My world shattered when I was given this diagnosis and told I needed to have chemotherapy.”

The NCD Alliance has developed 15 Transformative Solutions, which are recommendations for contextually appropriate, person-centred information about NCDs and their risk factors for people living with HIV.