Ben Lineberger is a junior at UNC majoring in journalism and public relations. He is also a web consultant for UNC’s IGHID. This past fall semester, Ben studied in London and interned with National AIDS Trust or NAT. NAT is the United Kingdom’s leading charity dedicated to transforming society’s response to HIV through fresh thinking, expertise and practical resources. Ben spent the semester working with NAT on a number of educational campaigns, including having a kissing Booth in Soho Square on Dec. 1 for World AIDS Day in response to NAT research that shows 16 percent of people wrongly think you can get HIV from kissing, up from 4 percent 10 years ago. Below, Ben shares his thoughts on how far the UK has come in HIV prevention and treatment and where it still needs to focus.
During my time interning at NAT (National AIDS Trust) in London, I’ve learned so much about the whole HIV sector and seen a glimpse of what it’s like to live with HIV. I’ve been the communications intern at NAT this past semester and the whole experience has taught me more than I ever expected. I’ve not only gotten to do more for an organization in just a few months than I have in any previous internship, but as an intern I’ve participated in meetings with top ad and PR agencies, helped build a campaign, and performed research that’s informed our press releases and blogs. But what I’ve been most surprised by is how wrapped up in the fight against HIV and HIV stigma I’ve become. Here’s a bit about what I’ve learned about HIV in the UK:
Quality of life with HIV in the UK has seen marginal improvements in the past few years. Though it’s come quite a ways from the 1980s and 90s, there’s still a lot of work to do in terms of making life better for people living with HIV. In regards to social climate and public attitude toward HIV, though there have been recent improvements in policies concerning healthcare workers with HIV, a stigma still exists that makes it hard for folks to be open about their status. People face misunderstanding about their status, with a lot of people still thinking they can get it from kissing or sharing food. In addition, only recently have healthcare workers with HIV been able to perform exposure-prone procedures provided they’re on treatment. This policy is actually safer for patients, as undiagnosed HIV is actually more dangerous than when someone knows they have it and are on treatment. Discrimination, both overt and subtle, minimizes HIV as a serious issue and makes it difficult for people to get the facts about transmission and sexual health. This contributes to the growing problem of late diagnoses, as last year saw 40 percent of adults diagnosed at a late stage, after treatment should have begun. And with 72 percent of new diagnoses last year being among gay and bisexual men and black African heterosexuals, it’s evident that both prevention and testing efforts must be ramped up in the UK.
Clinically, more efforts must be made to strengthen prevention measures. PrEP, which stands for pre-exposure prophylaxis, has been found to almost always be effective at preventing uninfected individuals from contracting HIV if taken correctly. But in the UK, it’s unavailable on the National Health Service (NHS), which means almost no one can get it unless they have enough money to order it from overseas. Though treatment for those who already have HIV is made widely available in the form of ART (antiretroviral therapy), there is still a serious problem with the way HIV prevention care is managed, as the NHS is essentially failing those most at risk of contraction.
Another side of the issue with HIV care in the UK is lack of knowledge, stemming not only from discrimination in society, but also from the way sexual health is taught in UK schools. The curriculum for sex and relationship education, or SRE, doesn’t include any compulsory lessons on same-sex relationships. This means young people who identify as anything other than heterosexual aren’t getting vital, reliable information about their bodies and sexual health, which is leading to ignorance surrounding HIV, not to mention other risks that come from sex. This is another type of prevention that the UK is failing to ensure is working properly, and can only be corrected if SRE is free from discrimination as well.
Not all is going badly, however, as there are many HIV-related successes. The UK is world-leading on treatment, as anyone living with HIV can access ART for free on the NHS, meaning that there’s an extremely low death rate from HIV and people can manage their health and have full life expectancies. ART can also help people achieve undetectable viral loads, which enables them to have sex with their partner without risk, and to reproduce without risk of passing it on to their children as well. Additionally, as the population of people living with HIV is aging – one in four are over 50 – NAT has developed new guidance for healthcare workers. Unfortunately, some parts of the health care sector don’t have up-to-date information on HIV and how it’s transmitted, which can lead to discrimination and insensitive treatment for the aging population. The new guidelines advise on how to be receptive and judgement-free, as well as maintaining confidentiality. There have been a great number of improvements, but much more has to happen before people living with HIV have the best quality of life possible.
My experience at NAT has been especially educational because I’ve gotten to work alongside a brilliant policy team that helped the communications team be fully informed for all the decisions leading up to our campaign. Being updated on all the policy related to HIV has elevated my knowledge on the subject and helped me really understand all sides of the issue. I didn’t expect to be so moved by all the negative things said about people living with HIV, but once I realized how harmful the stigma still is I became really invested in fighting it. I’m lucky that I’ve gotten to be a part of a team that’s so focused on combatting unfair and uninformed stigma and discrimination, and I’m grateful that each part of the internship has taught me something. And though there are still faults in the UK’s policies and attitudes regarding HIV, London has been an amazing place to live and study for a semester and I’m really happy I got to be here.