Main story: Facing two pandemics: Which way for HIV positive people?

The Covid- 19 pandemic was an unexpected crisis that has since upended the lives of many people. But to those living with HIV, it has left them even more vulnerable and exposed. They are dealing with an epidemic amid a pandemic.

Rose Mwende, 36, a single mother-of-one and a businesswoman in Nairobi has been living with HIV for the last 16 years. She says that accepting the news that she was HIV positive didn't hit her hard like facing the coronavirus in the last nine months. "I was on the edge of a cliff before the pandemic but now, it is like I am clinging on the rocks hoping that I won't fall. My snacks selling business which was my only source of livelihood went under around April and now even getting money for rent and meals is a big challenge," she offers.

Angela Odiaga, 32, has had her fair share of challenges. Angela has lived with HIV for the last 30 years and tested positive for Covid in August just after her recovery from a bout of Pneumocystis pneumonia.

"When they said, this affects people with compromised immune systems, I thought, what does that mean to us?" says Angela, who is a member of an array of HIV survivor groups and whose livelihood got threatened by the Corona pandemic. Doctors who treat people with HIV are asking similar questions, and studies have been set-up in AIDS research centers to try and get answers quickly.

Threat to progress

"Covid-19 is threatening the progress that has been made in health and development over the past 20 years, including the gains made against HIV," reads part of the World AIDS Day message from UNAIDS Executive Director Winnie Byanyima. The day has been marked on the 1st of every December since 1988.

In the backdrop of the Covid-19 outbreak, the Ministry of Health in March issued guidelines on HIV prevention, care, and treatment, underlying the need for continued antiretroviral administration for those living with HIV/Aids.

"It is important to note that individuals living with HIV, especially those with co-morbid conditions and/or advanced HIV disease, maybe at a greater risk for Covid-19 related complications," says Dr. Catherine Ngugi, the head of the National Aids and STI's Control Programme division in the circular.

Financial hardships

But the situation on the ground on people living with HIV is dire. "Many women living with HIV are working in informal settings and, due to lockdown and restrictions of movement, they are not able to earn money to support themselves and their families," states an International Community of Women Living with HIV and AIDS assessment. Already, the assessment has revealed that it has been extremely challenging for women and girls living with HIV to obtain clear and accurate information about how to protect themselves and their families from Covid-19 as well as the precautions they need to take for the longer term as the pandemic continues.

Medication

Bernard Baridi, a youth HIV national prevention ambassador and the chief executive of Blast, a support group of young people living with HIV corroborates this. "In Blast, we have a community of about 47,000 young people living with the virus. What is happening right now is that most of them have stopped taking medication or are not following the right dosage because they are not able to access the health facilities because some have since moved far from the clinics they used to pick their medication from."

Access to healthcare and nutrition

He adds, "Individuals living with HIV are considered at a higher risk of infection so some are scared to go out even for their clinic appointments. Then there those who are still going out but have not disclosed their status to their friends. Now, there are many reports of young adults' parties. What we are looking at is a bleak future even with more infections."

Baridi, who has been living with HIV since birth adds that the loss of jobs and unavailability of new job opportunities has made it worse for the patients. "Without money, how are you going to afford a nutritious meal which is a requisite when taking antiretroviral drugs?" he poses.

A report released by UNAIDS last week revealed that there has been a decline in the number of people living with HIV who are initiating treatment and a decline in the number of HIV testing programmes.

Dealing with double stigma

Stigma is something that HIV sufferers are aware of. But now with Covid-19 many fear being subjected to the same shame.

It's something that Doreen Moraa, 28, is having to deal with in her organisation I am a Beautiful Story.  Her organization, founded in 2015, addresses HIV/AIDS stigma, encourages behaviour change, and gives hope to people living with HIV that there is life even after an HIV diagnosis.

"One of my prompts to establish the organisation was driven by self and societal stigma. I started by forming a support group which I soon realised was doomed to fail because the members and myself had different perspectives. Therefore, I established "I am a beautiful story" and sold merchandise. The business exposed me to the stigma and victimisation that people living with HIV go through because people feared wearing my products," says Doreen.

"Now our members have to deal with double stigma if they contract Covid. We are preparing them for that," says Doreen. Anecdotal evidence indicates that stigma associated with the COVID-19 can make people hide when they are sick and can also make people delay in seeking treatment.

"I have been deserted by some people who thought that they could get infected by the mere act of talking to me on phone. I think that most people are ignorant and do not want to learn more about these diseases," says Angela Odiaga who has recovered from Covid-19 and is living with HIV.

Lack of essential drugs

"For most people affiliated with our community-based organisation, the major challenge during this season, besides financial constraint is the unavailability of some necessary drugs. Around July this year, due to the Covid-19 disruptions, many of those who use medication such as Septrin and Nevirapine could not access them which increases their viral load making them more vulnerable and at a higher risk of contracting opportunistic diseases," she offers. Septrin is a prophylaxis used from the early days of the HIV response to prevent infections such as Pneumocystis jirovecii Pneumonia (PCP), diarrhoea, and malaria in people living with HIV. "Without them, they are more exposed," says Joseph Chebii, the Secretary-General of Clinical Officers Association.

Gender-Based Violence

For some women living with HIV, the past nine months have exposed them to domestic violence from their partners. In Dandora, Lucy Njenga in partnership with four other women ran a grass-root community-based organisation called Positive Young Women Voices (PVWY) which seeks to empower girls and young women.

"Our work revolves around menstruation management, mentorship, and advocacy against gender-based violence. At the heart of these activities are talks on HIV prevention and how to help stop stigma and discrimination. With the pandemic, gender-based violence is an emerging issue that has been exacerbated by the pandemic. "There are women who had not disclosed to their partners that they were HIV positive. With the "Stay At Home" guidelines, their partners found out and this resulted in violence. Amid the pandemic, we received our first funding and although we don't deal with GBV cases directly, we are currently running monthly training on violence against women and girls," she says.

Statistics

On Tuesday, December 1st the World will celebrate Worlds AIDS Day with the theme "Global Solidarity and Resilient Services". The day has been marked since 1988 and along the way, many strides and developments have made been. According to a 2019 report by UNAIDS, Antiretroviral therapy (ART) for instance is helping those living with HIV live healthier, longer lives.

In Kenya in 2018:

• 1 600 000 people were living with HIV.
• HIV incidence per 1000 uninfected—the number of new HIV infections among the uninfected population over one year—among all people of all ages was 1.02.
• HIV prevalence (15–49 years) was 4.7 percent
• 46 000 people were newly infected with HIV
• 25 000 people died from an AIDS-related illness

Data from UNAIDS

Side Bar

By Lilys Njeru

I have battled two pandemics: HIV and Covid-19

Angela Odiaga has already survived one pandemic. The 32-year-old Job seeker and Health Records Officer professional has been living with HIV for 30 years. When Coronavirus, hit the country, she grew worried. Then in August she tested positive for Covid-19. Now recovered, her biggest worry is that Septrin, a crucial drug for HIV positive people, is out of stock in the country. She talks about her experience dealing with two pandemics.

 “I had been battling Pneumocystis Pneumonia (PCP) for close to nine months and started to feel better. PCP is a serious infection that causes inflammation and fluid buildup in your lungs. It's brought on by a fungus that spreads through the air. This fungus is very common. Most people's immune systems have fought it off by the time they're three or four years old, but being HIV+ means that my immunity is often compromised.

I was already stiff bored of staying at home and I yearned to go out and do something with my life.  I am a health records officer but jobs have been hard to come by.

In July, amid the pandemic, I set up a small business where I sold onions and charcoal.

Early August, I heard that one of my frequent customers had tested positive for the Coronavirus. At the same time, I started experiencing symptoms associated with the virus- fatigue, fever and a dry cough.

“You should take a Covid-19 test,” my mother advised.

Tested Positive 

On August 12, I took the test and two days later, I received my results. I had tested positive.  Reading through the report, I was overwhelmed by emotions. I was scared and for a moment, I thought that I was going to die.

I have been living with HIV since I was two, a virus I contracted through blood transfusion. Seeing that most people who were dying then had pre-existing conditions, I was scared.  Because of my status, I am considered vulnerable and at a higher risk of infection. Also, there is still a lot of stigmatisation around Covid-19 patients and having faced the painful sting of stigma after disclosing my HIV status, this was a double worry for me.

Stigma

Before I got the pneumonia, I had been stigmatised so much that I sank into depression and stopped taking my medication for close to a year.

In 2016, I thought that I had found my true love and my then partner of two years and I started making plans to get married.  In May that year, in the company of my parents, we met his parents to pick on a wedding day. A counsellor and our officiating minister were also present. Even before we could settle on the date, his parents said that they were not okay with me getting married to their son. “I want to kill him,” they accused due to my HIV status.

I think having gone through that phase and attended many counselling sessions, the Covid-19 while being a blow, wasn’t out of ordinary. I have still been deserted by some people who thought that they could get infected by the mere act of talking to me on phone. I think that most people are ignorant and do not want to learn more about these diseases. There is also the fact that they have not been shamed, so they do not know the pinch of it. “If you wouldn’t like it on you, don’t do it to others,” is my message for the season.

I have received a lot of attention and care from my mother, who is a nurse, during my 28 days of home-based care isolation. I had to seclude myself double the normal isolation period after testing positive twice. I had a good support system, and I am now out of the woods and regaining my health.

Besides the stigma, one of the other challenges that I have faced during this period is the unavailability of medication and to be precise, Septrin, a drug we take to prevent PCP.  When I went to the clinic last month, the drug was still out of stock.  I don’t know what will happen when my supply, which is from many months ago, is over.  And this is a constant worry for many people living with HIV during this pandemic season.”