'I was told I had between three and nine months to live'
HIV activist Jonathan Blake believes he was one of, if not the first person to be diagnosed in Britain with human immunodeficiency virus, known as HIV, when he was aged 33.
"I was diagnosed in October 1982 at the Middlesex Hospital. It was incredibly winding."
He was diagnosed so early in the UK Aids epidemic that he was named Patient L1 at the hospital, and his story was featured in the 2014 film Pride.
Recalling the early days of diagnosis, he told BBC London "every single lymph node in my body had just erupted".
After undergoing tests in hospital, he was kept in a side ward for two days.
Jonathan, who is now 76, said he was told by doctors he would be given "palliative care when the time comes" - to which he thought: "I'm 33, do I really want to hear about palliative care?"
He added: "I have been living with this virus and literally just trying to live every day. Never thinking that I will have a life, it's always been there."
HIV is a virus that damages the cells in your immune system and weakens your ability to fight everyday infections and disease.
Aids (acquired immune deficiency syndrome) is when a number of potentially life-threatening infections and illnesses happen when the immune system has been severely damaged by the HIV virus.
While Aids cannot be transmitted from one person to another, the HIV virus can.
"It really wasn't until 2015, when they first announced 'U = U', 'Undetectable = Untransmittable', that I was no longer this kind of leper - that I had this poisoned blood, that I could infect anybody," Jonathan said.
The term means that if someone has an undetectable viral load, they cannot sexually transmit HIV to others.
The Terrence Higgins Trust charity reports that by 1999, 33m people were living with HIV worldwide while the World Health Report listed Aids as the fourth biggest killer worldwide, 20 years after the epidemic began.
According to the National Aids Trust, 2023 was the highest year for people receiving HIV care with 107,949 treated - an increase of 27% across the last 10 years.
Jonathan said: "HIV is this forgotten epidemic. It is never talked about and it's so important it is.
"A lot of that is to do with stigma."
He added: "I was on effective medication, because we have an amazing NHS. I am so fortunate that I have had access to the medication.
"The most important thing to do is know your status, be brave, get tested.
"The developments that are happening are extraordinary - even though there is no cure," he continued.
"I'm living proof."
Jonathan attended the launch on Wednesday of the report Getting to zero by 2030: HIV in London at the site of the future HIV/Aids Memorial which is planned to be placed in Fitzrovia.
In 2018, the London mayor, London Councils, Public Health England and NHS England signed up to the Fast-Track Cities Declaration to reach zero new HIV infections, zero HIV-related stigma and zero HIV-related deaths by 2030.
The report, by the London Assembly Health Committee, found that despite progress in attitudes towards HIV, HIV-related stigma remained prevalent in London and the UK.
London has historically had, and continues to have, higher rates of HIV than the rest of the country.
However, the London Assembly said the city was leading the way globally to end new HIV cases and was seen as a leading international example through its HIV prevention and treatment programmes.
The Assembly added that "concerted action" would be required to increase testing, improve access to Pre-Exposure Prophylaxis (PrEP), ensure that everyone with HIV could access the care they needed and that services must reach people and communities who were currently missing out on them.
Recommendations in the report included:
Giving greater prominence to the issue of HIV, with a focus on what key actions were needed to help London reach its 2030 goal
The mayor should promote the HIV Confident charter in London and advocate for more organisations to sign up to it in 2025, including the councils, healthcare settings and businesses
The mayor should help ensure that construction of the HIV/Aids memorial in London was completed by the end of 2027 and use it as an opportunity to work with others to promote anti-stigmatising initiatives and public health messaging in relation HIV
Chair of the London Assembly Health Committee, Krupesh Hirani, said London was "a long way off" reaching its 2030 target.
"After many years in which there was a year-on-year decline in new HIV cases, there has been an increase in cases in London and England since 2020. We would like to see the mayor take further action," he said.
A spokesperson for the mayor said Sadiq Khan would respond to the Assembly's report in due course.
They added: "The current government has committed to commissioning a new HIV action plan and the mayor looks forward to working closely with ministers to help end HIV cases by 2030, as we build a fairer and healthier London for everyone."
In December 2023, the mayor announced £130,000 of funding from the Commission for Diversity in the Public Realm towards the construction of a permanent HIV and Aids memorial in London.
Aids Memory UK, which is behind the project, said the memorial would be unveiled at the end of 2027 and the artwork would take the form of a felled tree.
Ambassador of Aids Memorial UK, Mzz Kimberley, also known as Kim Tatum, said: "The memorial is going to be a place where people can go and reflect, educate themselves, feel peace, talk to people.
"This memorial will mean that everyone who lost their life had meaning.
"It's a dedication to all the people around the world who've lost their life, or the injustices that society has brought to them."
The memorial means a lot to Jonathan, saying it would help "create a community - I am so proud to be part of this HIV community.
"I've lost lots of friends - some very, very early but some more recently, and it still hurts."
Listen to the best of BBC Radio London on Sounds and follow BBC London on Facebook, X and Instagram. Send your story ideas to hello.bbclondon@bbc.co.uk
Design revealed for Aids memorial near Diana ward
Life on London's first Aids ward
'Life was a party before Aids arrived in London'
Getting to zero by 2030: HIV in London
Aids Memory UK
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Yahoo
9 hours ago
- Yahoo
Decades-old HIV charity's fear over future funding
A London-wide HIV charity has said it could be forced to close if the funding crisis it is facing continues. Positively UK, which has supported people with HIV for almost 40 years, has already closed its pan-London gay men's peer support group after being unable to secure funding for its future. Silvia Petretti, CEO said: "The support we give is very emotional. However, most of the time we have very short-term funding. From one year to another, we never know if we're going to be around." The government said it was "fully committed" to ending new HIV transmissions in England by 2030 and that its upcoming HIV Action Plan would focus on prevention and testing, as well as living well with HIV. According to the National Aids Trust, 2023 was the highest year for people receiving HIV care, with 107,949 treated - an increase of 27% across the last 10 years. Ms Petretti said: "HIV is not over. We have treatment for HIV, but we don't have a treatment for stigma yet." "Positively UK has existed since the 1980s," she added. "We're going to be 40 next year and I am worried that our services may not be there for people in the future because of the lack of funding. "We finished the year in the deficit and one of the most important services for us, the gay men's project, had to stop. In the past two years we applied to nine different funds and we couldn't secure any funding for the project." Phil Dehany started attending the support group four years after he was diagnosed with HIV in 2016. "I live by myself here in London and it can be lonely," he said. "Those opportunities to meet up with people once a month were a lifeline. "I would go as often as I could, and it's one of those things that you don't miss until it's gone, and I wish now that I'd gone a lot more often." "It was really sad when the project came to an end - straight away you've just lost that connection to that community." Mr Dehany said he now uses a range of other voluntary organisations, but fears that if funding struggles continue, those who need support, including elderly people living with HIV, will suffer. 'Nothing to replace that service' The voluntary and community sectors that offer support services for people living with HIV have faced big cuts in the last decade, the National Aids Trust said. A report by the charity found 71% of London's HIV voluntary, community, and social enterprise organisations had to either reduce staff numbers, close services, merge with other organisations or use cash reserves to cover operating costs in the last three years. Some 40% were concerned about their ability to deliver services over the next three years. Robbie Currie, CEO of the National Aids Trust, said: "There's a funding crisis going on within the sector across the UK. "Statutory services have been massively reduced. It has really impacted on service provision. Services are either being cut completely or they are being reduced." Of Positively UK, he said: "There's just nothing to replace that service." The government recently pledged to end all new HIV diagnoses by 2030. Ms Petretti said: "The government wants the UK to reach zero transmissions by 2030, but if people are not supported to stay well, we will not reach this goal." In June, the Local Government Association warned that sexual health services in England were grappling with "unprecedented pressure" and urged the government to carve out a 10-year strategy and invest more to deliver "expert, timely care". A spokesperson for the Department of Health and Social Care said its 10-year health plan focused on how local government could improve services for sexual health by making better use of funding and working more closely with the NHS. They added: "We are fully committed to ending new HIV transmissions in England by 2030 and our upcoming HIV Action Plan will focus not just on prevention and testing, but also on helping people live well with HIV." They said more than £6m had been invested in the National HIV Prevention Programme and £27m of funding was announced in December. Additional reporting by Josef Steen, Local Democracy Reporting Service. Listen to the best of BBC Radio London on Sounds and follow BBC London on Facebook, X and Instagram. Send your story ideas to More on this story Sexual health clinic axed despite STI hotspot Battle against HIV in London 'needs scaling up' 'I was told I had between three and nine months to live' Related internet links Positively UK Government guidance on commissioning local HIV sexual and reproductive health services
Newsweek
19 hours ago
- Newsweek
Woman Diagnosed With AIDS Given 2 Years to Live—Shock Over Her Health Now
Based on facts, either observed and verified firsthand by the reporter, or reported and verified from knowledgeable sources. Newsweek AI is in beta. Translations may contain inaccuracies—please refer to the original content. "I kept my status hidden for decades to protect my family, but now it's my time to talk," Jennifer Comstock told Newsweek, 35 years after an AIDS diagnosis left her in denial. In 1990, Comstock and her first husband were on active duty in the Marine Corps. With her husband due to be sent out to the Persian Gulf, he submitted to a mandatory HIV (human immunodeficiency virus) test, which was positive. That wasn't when Comstock learned her fate, as she didn't know her husband was living with HIV until she visited him in the hospital and noticed countless warnings about HIV on his ward. Comstock was faced with the reality that her husband had been cheating on her with men and may have transmitted HIV. Just 20 years old, Comstock got tested and then came a perilous wait for the results. A month later, she was given the devastating news that she too was positive. "As I was on active duty in the Marine Corps, I was expected to be composed and to keep breathing, which I did," Comstock said. "In those early years, I lived in denial. I just believed I was going to be OK, without any real reason for feeling that way." During her first trip to the hospital, Comstock, now 55, learned that her T cells, a type of white blood cell that helps the immune system fight germs, were below 200. The normal range can vary, but The Cleveland Clinic suggests that generally it should be between 500 to 1,200 cells for a healthy adult. HIV is known to attack white blood cells and causes the body to make fewer T cells. By the time she learned of her diagnosis, Comstock's health had already deteriorated significantly. As a result, she was given an automatic AIDS (acquired immunodeficiency syndrome) diagnosis. Jennifer Comstock in 1990 while in the Marine Corps, and with her second husband. Jennifer Comstock in 1990 while in the Marine Corps, and with her second husband. @positivejen / TikTok Untreated, HIV weakens the immune system and can become AIDS in around 8 to 10 years, according to the Mayo Clinic. People with AIDS are more likely to develop other diseases, causing symptoms such as sweats, chills, recurring fever, fatigue, mouth lesions, and weakness. Approximately 1.2 million people in the U.S. have HIV, and around 13 percent of them don't know. In 2022, an estimated 31,800 people acquired HIV in the U.S., with the highest rates in the South. Following her diagnosis, Comstock was given only 2 years to live and told to "get [her] affairs in order" before she passed. "It definitely makes you live life to the fullest," she said. "I did what I wanted to do. I joined the military, in a large part to be able to afford college. But then I thought, why bother? I won't live to graduate, so I'd rather not spend my time studying. By my 40s, I went to college and graduated cum laude with a degree in history. I've never done anything by halves since my diagnosis. I give my full self to everything and everyone I am involved with." She's been taking ART (antiretroviral therapy) since 1997, which prevents the disease from transmitting if there's an undetectable viral load. In 1994, Comstock met her second husband who was HIV negative. She dreaded having to tell him that she has AIDS, assuming he'd walk away before their relationship even got started. "Instead, he said he didn't care if we had 2 years or 20," Comstock said. Ultimately, they had 30 wonderful years together and Comstock welcomed three children, all HIV negative. When they vowed to love each other in sickness and in health, they both truly meant it. "I ended up being the one taking care of him after he had an aortic dissection in 2007. I took care of him through two open heart surgeries and 17 years of bad health. You just never know how life is going to work out," Comstock told Newsweek. "My husband and I always wanted to travel. It wasn't always easy when my husband was sick, but we always said we could be sick at home, or sick somewhere exciting." Jennifer Comstock with her second husband on vacation. Jennifer Comstock with her second husband on vacation. @positivejen / TikTok Life has thrown many challenges at Comstock, but she's remained resilient. In recent years, Comstock sadly lost her husband and son (both unrelated to HIV). She's battled many illnesses, but her health is much better now, and the disease is undetectable. Her immune system was severely damaged before ART medication became available. Indeed, if that breakthrough didn't occur when it did, Comstock thinks she "wouldn't have made it" because she was incredibly sick. There were complications at first, including cardiomyopathy, heart failure, pneumonia and mini strokes, but Comstock isn't certain if they were caused by HIV or the medication. "Some of those early meds were much harsher than the newer ones," she said. Despite being told she only had two years left, Comstock has gained a college degree, started a family, and become a qualified travel advisor. Jennifer Comstock with her second husband while traveling the world. Jennifer Comstock with her second husband while traveling the world. @positivejen / TikTok Comstock has been living with AIDS for 35 years and no longer feels like she has to live in secret. She stayed silent to protect her children, but now that they're grown up, she is using her voice to educate and raise awareness. She created a TikTok account (@positivejen) to discuss her diagnosis, answer questions, and to break the stigma. "I am here and so many are not," she said. "Someone needs to speak up, especially for women. I want people to understand that people living with HIV are normal. We have kids, husbands, careers, full lives. HIV is something we have, not who we are. HIV doesn't define me." She added: "I have people from all over the world contacting me for advice. So many are just happy to see someone like me living a normal life. I often have to correct people posting misinformation. AIDS denialism is still alive and well—it's not like 1990, but it's still there." Is there a health issue that's worrying you? Let us know via health@ We can ask experts for advice, and your story could be featured on Newsweek.
Health Line
2 days ago
- Health Line
What Is Rupioid Psoriasis?
Rupioid psoriasis is a type of psoriasis that causes thick plaques that may resemble barnacles or oyster shells. It's rare, but it may cause severe symptoms for some people. Psoriasis is an autoimmune disease that causes rashes that are often itchy and scaly. The most common type, plaque psoriasis, is characterized by raised and red patches of skin. Rupioid psoriasis is a type of plaque psoriasis. Some people with rupioid psoriasis develop severely itchy or painful plaques that can cover large areas of the body, such as the back or limbs. Due to the thickness of the plaques, it can be challenging to treat with creams, but many people have relief with medications taken in other ways, such as injections. Learn more about rupioid psoriasis, such as potential causes, symptoms, and treatment options. Rupioid psoriasis causes and risk factors Rupioid psoriasis is a rare type of plaque psoriasis. It's frequently associated with immunosuppressive conditions like HIV. Doctors don't know the exact cause of plaque psoriasis, but it's thought to develop when your immune system starts attacking healthy skin cells. This autoimmune reaction can cause inflammation and the formation of plaques. Rupioid psoriasis seems to occur more frequently in males than females and is particularly rare among children. Psoriasis is thought to develop due to a combination of factors, including genetics and environmental factors. People with direct family history of psoriasis seem to be more likely to develop it, too. Plaque psoriasis often develops after a previous skin injury, such as: cuts scrapes insect bites sunburns Symptoms often appear after exposure to a certain trigger. Along with skin injuries, common triggers include: stress infections frequent or excessive alcohol consumption weather changes like changes in humidity smoking alcohol sunlight some medications »MORE: These are the most common psoriasis triggers. Psoriasis and medications Psoriasis flare-ups have been linked to many types of medications, such as: beta-blockers antimalarial drugs bupropion calcium channel blockers captopril fluoxetine lithium penicillin terbinafine interferons interleukins fluoxetine glyburide granulocyte colony-stimulating factor Rupioid psoriasis symptoms Rupioud psoriasis and other forms of plaque psoriasis cause raised plaques of skin that usually have a silvery and crusted layer over them. Unlike other forms of plaque psoriasis, the characteristic sign of rupioid psoriasis is thick and crusty plaques that resemble oyster shells or barnacles. Plaques may also: cause pinpoint bleeding when the area is scraped (Auspitz sign) be a darker color than plaques caused by other types of psoriasis have well-defined borders Plaques can occur anywhere, but often occur on your: torso scalp knees elbows arms legs Rupioid psoriasis pictures Here are some examples of rupioid psoriasis. Note the barnacle or oyster shell-like appearance of the plaques. Potential complications of rupioid psoriasis People with rupioid psoriasis seem to be particularly prone to developing a complication called psoriatic arthritis. Psoriatic arthritis can cause symptoms like: joint pain and tenderness swollen joints joint stiffness reduced range of motion warmth in your joints People with psoriasis may also be at an increased risk of developing some other conditions, such as: cardiovascular disease eye inflammation (uveitis) some other autoimmune conditions »MORE: These are the potential complications of psoriasis. When to get medical help It's important to seek medical help if you develop potential symptoms of psoriasis, such as unexplained rashes or itchiness. It's also important to visit your doctor if you've previously been diagnosed but you develop new or worsening symptoms. Your doctor can recommend how to reduce your symptoms and tell you if you may benefit from treatments like prescription medications to reduce your symptoms. »FIND CARE: Find a dermatologist in your area today. Rupioid psoriasis diagnosis The initial step to getting a psoriasis diagnosis usually involves visiting your primary healthcare professional. They will ask you questions about your symptoms, review your medical history, and examine your skin during your initial appointment. They may highly suspect psoriasis based on the appearance of your plaques. To confirm the diagnosis, they may take a small sample of your skin called a biopsy so that it can be examined under a microscope. They may refer you to a doctor who specializes in conditions of the skin and hair, called a dermatologist. Rupioid psoriasis treatment The best treatment for you depends on the severity of your symptoms. Your doctor may suggest trying medicated anti-inflammatory creams. However, rupioid psoriasis can be particularly hard to treat with topical options because the thick plaques may make it difficult for them to penetrate your skin. Your doctor may prescribe oral medications or medications administered through injection in combination with topical medications to reduce immune system activity. These medications may include: methotrexate cyclosporine ustekinumab steroids Can you prevent rupioid psoriasis? It's not always possible to prevent psoriasis, but you may be able to reduce your number of flare-ups by avoiding your triggers. Many people find it helpful to carry a journal or keep a list on their phone tracking when their flare-ups occurred and which factors might have contributed. Living with rupioid psoriasis Psoriasis doesn't have a cure, but receiving proper treatment can help you keep your symptoms under control. Psoriasis often comes in flare-ups. Identifying your triggers and figuring out when your symptoms get worse is important for anybody living with psoriasis. You may have to try several treatment options before you find one that's effective for you. But many people are eventually able to keep their symptoms under control. Takeaway Rupioid psoriasis is a rare but often severe form of psoriasis that causes plaques that may resemble oyster shells or barnacles. These plaques can become very itchy or painful. It's important to speak with a doctor if you think you may have psoriasis or if you think your psoriasis is getting worse. They may recommend trying treatment options like prescription creams or medications administered through injections.
