I recently learned that one of my cousins has AIDS. Even though we haven’t been in contact for a few years, this information hit me really hard. While still trying to process everything, I couldn’t help but wonder why it had to get to the death sentence that is AIDS and not HIV. As I sat at the kitchen table, lots of reasons started to play in my mind – maybe she couldn’t afford the drugs, maybe this and maybe that. While thinking, I couldn’t help but acknowledge that the gravest fact of it all is the stigma that comes with the diagnosis.
From my experience, the real battle in the African communities against AIDS is within families and society. This is where the discrimination lies and on very many occasions it is personal. Reactions to the virus may be in the form of school children pointing fingers and refusing to play with others in school, in-laws hating and rejecting the widow of a son who died from an AIDS-related illness, or work dismissals and loss of friendships. Fear of stigma and discrimination can cause secrecy and denial amongst pregnant women who then avoid getting checked for HIV – a move that increases mother-to-child transmission. Breastfeeding is encouraged within the diverse African cultures, and because of HIV stigma, mothers maybe forced to carry own breastfeeding because they do not want to arouse the suspicion of family members as to why she isn’t breastfeeding. Stigma causes individuals to get really ill and when they start to seek help or treatment, the prevention strategy at this point will have lost its effectiveness. This is what I strongly believe my cousin had to face.
If you or someone you know is experiencing the stigma and discrimination you don’t have to go though it alone because there are organisations that are always there to help. In fact, right here in Newcastle you can contact Shine and Mesmac Newcastle. Shine is a community women’s health project based in offering support and services for ALL women, Trans women and non-binary people 16 and over. While Mesmac Newcastle works with gay and bisexual men and other men, trans men and non-binary people who have sex with men to increase the range of choices open to them. Both organisations offer time for a chat on anything to do with HIV or sexual health, and you could also order free and confidential HIV tests. They also provide condoms and anything else you may need, for free. Confidentiality means your personal information is kept secret from family members and even your own General Practitioner (GP). The means whatever you discuss with Shine or Mesmac will stay only with these services. If you are an organisation, Shine and Mesmac Newcastle can also offer sessions for your services and the individuals and communities you support. We have to put an end to the HIV-related stigma because it hurts many people so much to the extent of them losing support from the community, with families going the extra mile to hide HIV positive individuals in order to preserve their reputation.
There is no better time than now to make changes on how we treat people with HIV/AIDS within our different communities. So why not start today? All this week in England National HIV Testing Week (7 – 13 February) will be marked up and down the country. The National Testing Week is a campaign to promote regular testing amongst the most affected population groups in England. This helps to reduce the number of people living with undiagnosed HIV and those diagnosed late. There is no cure for HIV infection but this does not mean it’s a death sentence. Effective anti-retroviral (ARV) drugs can control the virus and help prevent transmission so that people with HIV and those at substantial risk, can enjoy healthy, long and productive lives.
My experience of HIV and AIDS is very different to Salha’s. One of my first memories was with the death of Freddie Mercury. At the outset of HIV, terrible terms like GRID (gay related immunodeficiency) were still used. The awful spectre of homophobia raised its head with slogans like “Thank God For AIDS” and so the stigma built, and built… and built. People were afraid, nobody knew the difference between HIV and AIDS, and AIDS was represented by a tombstone. Then it was Easy-E (rapper NWA) who also died of AIDS, Liberace, Arthur Ashe, along with Tony De Vit (DJ). But life with HIV now is very different. You could compare it with diabetes or any other long term illnesses. It’s true, today if you take your HIV medication and control your viral load then you can stay healthy with no major problems. With it, you can live a full and active life.
As a patient all you have to know is the vast and amazing advances that sexual health services have made. Check out:
PREP – Pre-exposure prophylaxis (take tablets before sex to prevent HIV)
PEP – Post-exposure prophylaxis (take tablets after a possible exposure to HIV)
U=U – undetectable = untransmissible
What a message! If you get treatment and your viral becomes undetectable then you can’t pass HIV on to your partner. Have a normal sex life! Even as a GP I’m left behind with the progress that sexual health has made. SHINE and Mesmac offer holistic care and they can see people face to face, or offer postal testing. I reflected a while back with another GP about care for a patient after a potential HIV exposure. Whilst so much sexual health care can be planned, we were both unaware that a supply of PEP medication could be sought from A&E when other services are shut. There is great care available for patients at our local services, and even outside of those times there is clearly.
So bearing all of this in mind I fully support HIV testing week. It’s best to find out sooner rather than later, as the advances in treatment are amazing. Don’t hold back! Even with the impact of COVID, sexual health services like Shine and Mesmac can help you. My advice to you is this:
Forget the stigma…
Get tested during HIV prevention week (7-13 February)
Lead a full and active life (whether positive or negative
What Is Happening During HIV Testing Week and How Can you Get Involved?
Online Live Sessions with Mesmac and Shine! Please click on the Eventbrite links to know more about each session.
- Monday 7th February 2022 – 10am-10:45am Bitesize HIV info session with
New Croft, with PrEP info and update – Click here
- Tuesday 8th February 2022 – 11am-11:45pm Bitesize HIV info session with
New Croft and Blue Sky Trust. Hear directly from people living well with HIV: Click here
- Wednesday 9th February 2022 – 12pm-1pm Listen to Mesmac and Shine
talking about National HIV Testing Week and the importance of testing on
Spice FM Radio!
- Wednesday 9th February 2022 1pm-1:45pm Bitesize HIV info session with
Dr Louise Fernandes from Health Psychology, talking about mental health
and adjusting to an HIV diagnosis: Click here
- Thursday 10th February 2022 – 5pm-5:45pm Bitesize HIV info session with
Eyes Open steering group and Blue Sky Trust: Click here
- Friday 11th February 2022 – 1:30pm-2:30pm Bitesize HIV info session with
artist and activist Stephen Hart: Click here
Online Confidential Drop-Ins with Mesmac & Shine (These sessions are aimed at people living in the North East of England)
- Monday 7th February 2022 – 1pm-3pm: Click here
- Monday 7th February 2022 – 7pm-8pm: Click here
- Tuesday 8th February 2022 – 1pm-3pm: Click here
- Wednesday 9th February 2022 – 2pm-5pm: Click here
- Thursday 10th February 2022 – 12pm-2pm: Click here
- Thursday 10th February 2022 – 6pm-7pm: Click here
- Friday 11th February 2022 – 3pm-4pm: Click here
Bookings will end 30 minutes before the start of the event. Please join the Zoom event 5 minutes before the start time as the session will begin promptly.
Thank you for this
It is my pleasure. thank you for reading 🙂
This is an insightful piece.. Thank you so much Salha and Dr. Daniel.
You are very welcome Norah!
Personally, I think we have dialogue so that information moves out to the people. Most people make comments out of ignorance
We should definitely have more conversations around the topic. HIV positive people should not be discriminated against.
Insightful and timely piece.
We should talk more about this.