Candlelight Memorial empowers people living with HIV/AIDS

For two miserable years, Sharifah Nalugo painfully struggled with what she called a mysterious disease. In 2014, she fell critically sick and nearly died after spending two days in comma. She was heartbroken and grieved.

She was a beautiful adolescent and a rumour went around in the suburbs of Kawempe-Bwaise, where she was staying, that girls who were envious of her beauty were bewitching her. Unfortunately, Nalugo believed so and didn't take the trouble to seek medical attention.

The pain intensified and she could not bear it. All she wished for was to die, thinking it was only death that could take away the pain. But that is now history.  Life is going on so well for the 23-year-old Nalugo that she can now afford to reminisce about her ordeal with nostalgia.

She recalls in 2015 when a peer who suspected she could be having HIV/AIDS (she had manifested some AIDS signs) took her to Nakivubo Stadium where the International AIDS Candlelight Memorial (IACM) was being held.

"There I found people who changed my perception with advocacy lectures on HIV and AIDS. They preached compassion, dignity, courage, awareness of risk, the need for unity between people living with HIV/AIDS, and the promise of love," she said.

"After those lectures, I picked courage and tested for HIV and, indeed, confirmed that what had been disturbing me was HIV/AIDS and not witchcraft as I had all along believed. Naturally, I was terrified by the news that I had the HIV virus," says Nalugo.

Sharifa Nalugo narrates how she was empowered by the Candle Memorial day. Photo by Elvis Basudde

But after being empowered during those candlelight sessions, she never remained the same. Today she is a young girl living positively with HIV. She is a self-taught counsellor and a peer educator. She has moved from frightened victim of HIV/AIDS to activist, to HIV dissident and finally to spokesperson for new views about the epidemic.

Last week, Uganda joined other communities all over the world to simultaneously observe the International AIDS Candlelight Memorial event, also locally known as the Bonfire. The day serves as a community mobilization campaign to raise social consciousness about the epidemic. It serves as an important intervention for global solidarity, breaking down barriers of stigma and discrimination, and giving hope to new generations.

The first International Candlelight Memorial was observed in Uganda in 1988. During that inaugural memorial, The AIDS Support Organization (TASO), working with the government of Uganda played a key role and mobilized their support groups which mainly comprised of people infected and those affected by AIDS at that time.  Since then, Uganda has commemorated the international candlelight memorial as a precursor to World AIDS Day, every year.

This year's theme is "Joining Hands to scale up HIV Prevention." 

Milly Katana, an HIV activist and a survivor of AIDS, says this is a very important day for people living with HIV, a day for everybody to step back and remember what HIV means to our lives, our families and society. It is a day to remember those who would have been here with us but unfortunately because of HIV are not anymore.

"Today we are here to think about how we can take action and end AIDS together. AIDS is not a responsibility of people living with HIV. All of us should join hands, as the theme goes, to scale up HIV prevention. However, people living with HIV play a very significant role. We take all those emotions combined including the anger and take action," Katana says.

She says that there are specific actions that are very important for us to take if we are to end the AIDS epidemic. The first step in the journey is for someone to know about their HIV status and the only way to know that is by going for an HIV test.

It is also important to think about how to get people to access the services that are needed for HIV prevention. We need money to achieve this but unfortunately much of the investment into the response to the AIDS epidemic is regrettably coming from our partners from outside, which cannot be sustainable.

"We have heard that the National Medical Store (NMS) will no longer be able to deliver essential drugs to primary health care facilities. This is a recipe for disaster. We need to take action now if we are to end AIDS because. As people living with HIV, we are calling upon the government to increase domestic financing around HIV," she pleaded.

Katana also calls upon development partners to eliminate the stock outs of the ARVs, TB and essential commodities. She says that AIDS is not a standalone. Somebody can have the ARVs but comes down with malaria because there are no anti-malarial drugs.

"I particularly thanked the media. We are very grateful that the media have walked with people living with HIV this very far. It has been more than 30 years since HIV was announced in Uganda and the media has worked with us to break the silence around HIV and sensitize the community," she says.

The occasion to light candles to commemorate the day took place at the offices of the National Forum of People Living with HIV and AIDS Networks in Uganda (NAFOPHANU), an umbrella organization of people living with HIV, in Mengo.

Milly Katana addressing the media. Photo by Elvis Basudde

Stella Kentutsi, executive director NAFOPHANU, says the day serves as a symbolic reminder of all our friends who have passed away and highlights the struggles that people living with HIV go through on a daily basis.

Kentutsi says that the Candle Memorial also demonstrates the continued need for visibility, leadership and commitment of communities and individuals to take action and achieve a better future for people living with HIV.

"We commend the Government of Uganda for the efforts to eliminate HIV through programs like ‘Test & Treat' which if rolled out expeditiously, will have all people living with HIV in Uganda start ART," she says.

 "We therefore encourage all Ugandans to know their HIV status and for those test positive to seek medical treatment and strictly adhere to it. This will contribute to "Viral Load" (the amount of virus in one's blood stream) suppression, leading to fewer new infections and AIDS related death" Kentutsi added.

She however notes that there are glaring gaps that are deterring our nation from realizing the 90X90X90 UNAID target, 90% of PLHIV tested and knowing their status, 90% of those who know their status enrolled into care and 90% of those seeking treatment having suppressed Viral Load.

Notable among these is the sporadic stock out of HIV and TB medicines, high dependency on donor funds to finance HIV interventions, limited implementation of the HIV policies, guidance and strategies, Gender Based Violence, poverty, hunger, inadequate HIV counselling as well as the overarching prevalence in HIV related stigma and discrimination.

HIV and AIDS is one of the most disastrous diseases in the current times. Since the HIV virus was discovered in 1982, more than 20 million people around the world have died from AIDS and some 40 million are estimated to be infected to date, according to the Joint United Nations Programme on HIV and AIDS.

Of those infected, more than 17 million are women and some 2 million are children. Nearly every part of the world has felt the impact of AIDS, but mostly in poor regions where people have little access to health care. Sub-Saharan Africa, accounting for 25 million people currently infected, has been particularly devastated by the pandemic.

1.5 million Ugandans, 120,000 of them children, are living with HIV (NSP). For a long time, HIV has stagnated to around 7.3% and experts warn that it is beginning to rise again in some places. The number of HIV-positive people keeps pilling up at a high rate, with 150,000 new estimated infections every year, according to the Ministry of Health.

The disease has wrecked economies, orphaned children, widowed parents, exhausted health systems, strained education, and deepened poverty. Social stigma and discrimination against those infected with HIV and affected by AIDS has also had serious repercussions on services delivery and their uptake as well as information flow and knowledge management.

Activists say that in spite of the efforts made by researchers in search for a cure for AIDS all over the world, there is still a long way to get a vaccine.  Therefore prevention remains the only social vaccine for AIDS, while treatment and care for those infected remain paramount in supporting prevention efforts. 

What People Living With HIV Call For

1. Improving domestic financing of the AIDS response

The government of Uganda only allocates 11% of the required fund to the AIDS response. 20% is provided by households, 1% from the private sector while 68% is from AIDS development partners. In the spirit of showing ownership of implementation of health strategies, plans and policies, government should scale up domestic funding. There is also need for increased budget allocation for Community Systems Strengthening to improve HIV community based monitoring. The establishment of the National HIV& AIDS Trust Fund provided for under the HIV Control and Prevention ACT 2014 should be expedited to improve funding towards the ASIDS response.

2. Elimination of sporadic stock outs of ARVs, TB drugs and other essential commodities

Stock outs greatly contribute to drug resistance which is more expensive to treat and eventually increases AIDS related deaths We need to have Health facilities effectively forecast the required supplies, order in time and National Medical Stores (NMS) should promptly honour the orders as well as being flexible enough to rapidly respond to emergencies.

3. Scaling up Routine Viral Load Testing services for people living with HIV on treatment

There is need for more sensitization, increasing the number of viral load testing tubes and HIV service providers. We recommend the use of Point of Care machines to decentralize testing services and reduce on turnaround time for people living with HIV to receive their results

4. The "Test and Treat "program should be embraced and expeditiously rolled out as this will promote positive living to the highest

5. Targeted HIV/AIDS response for adolescents and young people

Young people/ adolescents are more vulnerable to HIV and must be targeted with prevention, care and treatment related interventions. 570 girls are contracting HIV per week therefore access to services must be ensured for the young people who are most affected and marginalized.

6. Address hunger structural challenges

The lives of people living with HIV in hunger stricken districts and regions are at stake following the fact that they cannot take the lifesaving drugs on empty stomachs. Strategies to address the underlying challenges should be addressed as well as prioritizing people living with HIV when providing relief/ nutritional support.

7. The country should invest in HIV treatment literacy

So that all people on ART are trained on how to take the medicine with good adherence to minimize treatment failure. This should be coupled with adequate HIV consoling and recognition/ facilitation of expert clients who are playing a significant role as far as counselling and following up peers are considered in the country.

8. Optimal Treatment for people living with HIV

This will be achieved by scaling up primary health care for people living with HIV, improve access to medication, introduction of improved medicines like Dolutegravir (DTG), providing 3^rdline treatment at no cost in public health facilities for people living with HIV who are failing on 2^ndline and integration of HIV treatment into routine care.