Thank you and farewell
This edition of HIV update will be our final news bulletin as, with heavy hearts, we announced on Monday the proposed closure of our beloved charity, NAM aidsmap, this month.
We extend our heartfelt thanks to everyone who supported our vision for a world where HIV is no longer a threat to health or happiness.
Twice-yearly injectable PrEP
Pre-exposure prophylaxis (PrEP) is a form of HIV prevention that uses anti-HIV drugs to protect HIV-negative people from acquiring HIV. Currently, the most common types of PrEP are taken as daily oral pills.
There’s also long-acting PrEP, involving injections of a drug called cabotegravir every two months. This has already been approved in some countries.
And researchers have recently been investigating another drug called lenacapavir as ultra-long acting PrEP – people only need two injections of it per year. Lenacapavir is already used as a treatment for some people living with HIV who have problems with resistance and limited treatment options.
In a recent PrEP study, 5338 women living without HIV in South Africa and Uganda were given either lenacapavir injections or daily PrEP tablets. If they received tablets, these were either tenofovir disoproxil / emtricitabine (sometimes known as Truvada) or tenofovir alafenamide / emtricitabine (sometimes known as Descovy).
The researchers analysed the effectiveness of each PrEP option. They were excited to find 100% efficacy of lenacapavir. It means that there were zero new HIV infections among the women who took the innovative lenacapavir injection as PrEP. This is very rare in a trial of new drugs and a first in HIV science.
Even though the number of new infections with the other daily PrEP options were also very low, they were not zero as they were with lenacapavir. Because lenacapavir’s efficacy was so good, the study’s Data Monitoring Committee ordered the study to close early. However, that’s all we really know so far as only the headline figures have been reported: we may hear more at the AIDS 2024 conference at the end of the month, though full analysis may take longer.
These results are extremely promising and may be a game changer in how we prevent HIV. But many experts and activists are worried that the biggest barrier to supplying this game-changing preventative drug will be cost.
The current price for lenacapavir when used as treatment in the US is $40,000 a year, whereas generic tenofovir disoproxil / emtricitabine pills are less than 1% of that price. This makes lenacapavir unaffordable for most countries in the global south, even upper-middle-income countries.
Last month, the People’s Medicines Alliance wrote to lenacapavir’s manufacturer Gilead Sciences to demand that the company urgently license lenacapavir via the Medicines Patent Pool. They hope this will make the production of cheaper, generic versions of the drug possible.
The AfroCAB network of HIV community advocates also called on Gilead to move faster on equitable access to lenacapavir. “After thousands of our community members have taken part in clinical trials for lenacapavir and other injectable PrEP products, it is time that pharmaceutical companies, governments and donors play their part in driving access among the communities that supported the science,” they said.
In return, Gilead has announced: “We have been developing a…strategy is to deliver lenacapavir swiftly, sustainably and in sufficient volumes, if approved, to high-incidence, resource-limited countries.”
With 1.3 million new infections of HIV in the world every year, the need for an effective and affordable prevention measure is urgent.
Feelings about sex
Good sex, intimacy and physical pleasure are integral aspects of wellbeing. This is no different if you are living with HIV. But often, feelings about sex are complicated by an HIV diagnosis.
Read about feelings about sex after your HIV diagnosis in our recently updated page on aidsmap.
HIV and diet
Good nutrition is important for everyone’s health. Having HIV doesn’t mean that you have to make big changes to your diet. But eating the right foods can make you feel better, have more energy and can keep your heart and bones healthy as you get older.
A clinical trial has found that medically tailored meals and groceries, combined with nutritional education, can reduce hospitalisations and improve mental and physical health in people with HIV. But the intervention did not lead to an improvement in terms of unsuppressed viral load.
The US study compared two food services for people living with HIV and struggling with low incomes in California:
- “Food is medicine” approach. This included meals and groceries for three meals a day that are tailored to someone’s medical needs, plus several nutritional education sessions.
- Usual food services provided by a charity. This included groceries or prepared meals sufficient for one or two meals a day.
The study investigated if the “Food is medicine” approach could help to reduce viral non-suppression. Having a suppressed viral load means there’s very little HIV in your blood, which is one of the main goals of HIV treatment. An important way of maintaining viral suppression is adherence (taking your medication exactly as prescribed). This can be particularly difficult for people who experience food insecurity.
Both approaches reduced the numbers of people with an unsuppressed viral load. But there was no difference in how much each approach helped.
However, the risk of becoming severely food insecure among the “Food is medicine” participants was reduced by 77% over six months compared to standard of care. These participants also ate less fatty food.
But the “Food is medicine” project had a large impact on other aspects of people’s health. People who had the “Food is medicine” approach were more likely to take their HIV medication as prescribed and were less likely to have condomless sex. The risk of severe symptoms of depression was reduced by 68%. Among people who received the “Food is medicine” approach, the proportion of people who had a hospital stay in the past three months decreased from 11% to 5% while it actually increased with the other approach.
If you are having difficulty affording food, or buying food that you need for a special diet, a member of your healthcare team can put you in contact with sources of help. You can also find helpful tips on eating a healthy diet on a budget online, for example on The Association of UK Dietitians website.
There may also be a local food bank where you live. You can find them by googling “foodbank + your town”.
If you have any questions about your diet, we recommend you speak to a healthcare professional.
Should HIV controllers take HIV treatment?
HIV controllers are rare individuals who have a very low viral load without taking treatment.
Our updated page outlines reasons why controllers should consider taking antiretroviral therapy, and the effects of treatment on HIV controllers.
Your relationship with your doctor
In order to improve doctors’ education and training, a group of US researchers wanted to find out what ‘respect’ in health care meant to a particularly marginalised group of people living with HIV. In interviews with an ethnically diverse group of women living with HIV who all had a low income in Florida, they asked:
"What are examples of times you felt you were treated with respect by your doctor and nurse?"
The women shared that being treated as a person was fundamental to receiving respect from their medical team. They wanted clinicians who remembered their name and asked about non-medical aspects of their lives. One interviewee said:
“He doesn’t treat me like a number or a paycheck, he treats me like a person. Like we’re humans, like we’re people, we’re not a statistic.”
Feeling as though they were ‘in this together’ with their medical team was a sign of being treated equally and respectfully. They appreciated doctors who encouraged them to ask questions and took the time to explain things, which helped them get involved in medical decision-making.
Many of these interviewees had at times felt that they had been judged by medical professionals or had been talked down to. Other clinicians showed respect by treating people without stigma, shame or guilt. Also, they consoled and comforted their patients in times of distress.
One woman talked about a negative experience:
“She talked down at me, number one. Number two, you make me feel like I’m dirty. You know, like I did something wrong, you know, instead of rubbing my hand, and saying, ‘It’s going to be OK. We alright. You know, you alright.’”
Doctors also demonstrated respect by being available and accessible, including outside appointments. Finally, they made sure that people’s privacy and confidentiality were maintained.
The researchers say that while treating patients with respect is a core part of doctors’ education and training, this typically concentrates on respect for patient autonomy. The focus is on informed consent, respecting patients’ choices and honesty, but misses some of the issues that these women with HIV felt were important.
Diabetes and HIV
Type 2 diabetes increasingly affects people living with HIV as they get older. Changes to your lifestyle can reduce your risk of type 2 diabetes and help manage it.
Our updated page provides information on symptoms; diagnosis and monitoring; changes you can make to reduce your risk; and treatment and management of type 2 diabetes.
Editors' picks from other sources
Does AI have a place in the HIV community? | TheBody
Mathew Rodriguez investigates whether the harms, such as worsening climate change and health risks, outweigh the benefits of AI, such as quick access to information.
Giving it a try: a guide to clinical trials | POZ
Studies of new treatments, prevention tools, co-morbidity management and cure strategies are key to better quality of life for people living with or at risk for HIV.
Dr Alessandro Ceccarelli: “Every action, no matter how small, contributes to a larger movement towards a more just and inclusive society” | National AIDS Trust
A key figure of the Fast Track Cymru initiative in Wales, NAT trustee Dr Alessandro Ceccarelli is the former Head of LGBT+ Policy for the Welsh Government, and a leading advocate for LGBT+ and HIV rights in Wales.
What criteria should describe HIV-related cognitive impairment? | TheBodyPro
An international group of experts wants to stop using the HIV-associated neurocognitive disorder (HAND) criteria in favour of something that better characterises issues directly caused by HIV. But not everyone agrees.