From Front Line to Fortress

Starting our morning at the Terrance Higgins Trust

Today was an early morning as we met up with our faculty members and classmates. After breakfast, we loaded up on a coach which took us to the Terrence Higgins Trust, the leading HIV and Sexual Health charity in Europe. We got there early so we enjoyed some snacks (fresh strawberries!) and waited for our program to begin. At around 9:30 am we went into a conference room where we were introduced to Cornelis, Barrie, and a very inspirational guest speaker and advocate named Pank Sethi.

Students learning about HIV, stigma and discrimination in the UK

Pank spoke about his personal story and the trials he endured as an inmate in the English prison system in 2018. Pank educated us on the disparities in treatment of HIV in the prison system and the stigma that contributes to the lack of access to care.  He told us about how his status was revealed to people in prison without his permission and how his dignity was striped by the sharing of this private information. Pank explained how the first step of addressing HIV stigma is education.  And he began educating others while still in prison. Pank was ignored and bullied and even threatened with bodily harm because he was assigned kitchen duty and was involved in food prep. Misinformation about HIV was being spread among inmates and guards, including that the HIV virus can be spread via food. They offered to move him to another prison because the threats grew, but Pank decided he would sit down with a group of inmates and explain HIV and how it is spread. This led to him being accepted by his fellow inmates. 

Pank fells like he is lucky in that he is comfortable and confident in his own skin and with his sexuality, but others in his position are not.  Pank also is a very articulate and educated person which gave him the ability to communicate effectively with others. Pank shared that his time in prison dealing with these issues was the pivotal moment where he decided he would spend the rest of his life advocating for people with HIV; especially those in the prison system. His friend Stephen, a man in prison with HIV, committed suicide three days before he was to be released because he could no longer handle the bullying from his fellow inmates. Pank fells that Stephen could no longer see past his situation when he reached his breaking point and ended his life. Stephen’s official cause of death was reported as suicide due to depression. However, Pank made sure that Stephen’s parents knew the real reason Stephen took his own life and Pank again dedicated his life’s work to telling Stephen’s story and fighting for people who cannot fight for themselves. 

Pank also let us know that he was denied his HIV antiretroviral medication for sometimes weeks at a time.  Nurses didn’t understand why doses should not be missed and, when he complained, guards thought it was about him wanting to get “high”. But Pank explained that when he was diagnosed, doctors explained to him quite clearly that he should never miss a dose.  And when you have to repeatedly miss doses because the prison system is not making it available, you are super stressed and know that you can form a resistance to that particular medication.  So viral loads are not regular monitored and you may or may not get your needed viral suppressant medications. 

While treatment is an important priority to address the HIV epidemic, prevention is equally important as we learn at the UAB 1917 Clinic during our pre-travel visit.  We know that condoms are extremely effective in preventing STI’s.  We were shocked to find out that UK prison systems do not allow condoms in their prisons as it counter to their rule of “no relationships”.  However, sex happens and health departments are providing condoms, but are fined for bringing them into the prisons. PrEP is another tool for HIV prevention, but currently on one in 117 prisons in the UK are piloted the use of PrEP. Without these simple preventative measures, HIV is being spread in the prison system. 

Opt-out HIV testing is available in prisons, but most opt-out because they don’t understand exactly what they are being tested for and why.  More than two thirds of people living in prisons in the UK have a lower reading level than an 11-year-old, which means that they cannot understand the consent forms and opt-out of all testing. About 7% of the prison population is living with HIV, but others may not know their status. 

As an HIV and Sexual Health specialist, Pank encouraged us to use our voices to help bring justice to those in the prison system who have wrongly been treated because of knowing their status. Mr. Sethi’s biggest message was: “You need to get used to being at least a little uncomfortable all of the time”. He believes that in order to truly make changes and work towards ending the stigma around HIV, we, as public health professionals, need to be okay with hearing the hard stories and speaking up for people who feel like they cannot. Building a relationship with the people you work with, or better yet, working within your own community, is necessary to make people feel like you are on their team. Without building that trust, no progress will be made. 

After Pank’s presentation, we heard from two of employees of the Terrance Higgins Trust, Cornelis and Barrie.  They provided an overview of HIV in England, challenges with testing, treatment options, and care, and common preventative measures being used. We found out that 40.3% of those living with HIV in the UK are gay and bisexual males. Another 30.2% are black people of African heritage, 2.9% are black people of Caribbean heritage, and 0.21% are people who identify as trans and gender diverse. However, they feel much work is left to do as some communities are not being reached for awareness and testing. The community that is the hardest to reach in the UK is black and African women. There is a need for cultural competency when educating African women particularly, as this population may have experience other forms of discrimination and trauma including unequal power relationships, gender-based violence, social isolation, and limited access to schooling. These things increase the HIV vulnerability of these women and girls. Cultural practices such as female genital mutilation and other harsh rituals make the issue even more complex.   

Barrie and Cornelis of the Terrance Higgins Trust

Barrie spent a good bit of time explain how HIV treatment is accessed in the UK. For the general UK population, the goal for HIV is 90/90/90: 90% tested, 90% treated, and 90% with an undetectable viral load. Fortunately, the NHS makes it easy for more people to be tested and treated. Prevention is easier as well, with generic PrEP being no cost to patients within the NHS; even private PrEP is quite affordable (~19 pounds a month). This is a stark contrast to the $2,000 per month required for Truvada in the states. 

In both the U.S. and the UK, many obstacles remain before we can conquer HIV. These barriers, including fear, stigma, and prejudice, are deeply embedded in our culture and society. However, thanks to dedicated healthcare professionals and community-based organizations, education, and individuals willing to share their experiences, we are making progress every day. This gives us ample reason to be hopeful.

Once we finished, we then loaded back up on the coach and headed to our next location,The Tower of London. The Tower of London has a long history and has been many things over the years, a royal palace, a prison, an armory, a zoo, and much more. It was originally built by William the Conqueror in 1078 and expanded in 1399. As we walked the cobbled pathways, as public health students, we couldn’t help imagine the medieval health challenges that were seen here throughout the centuries.  From the basic hygiene practices in the palace (i.e. urinating in a hole in the wall of the palace) to dealing with disease outbreaks, the Tower provided us a reminder of the evolution of public health over the 900 plus years since this site was occupied by William the Conqueror.   

The White Tower

While at the Tower of London, we visited the White Tower, saw the Ravens, stood near where Anne Boleyn was imprisoned and beheaded, viewed the Crown Jewels, and took pictures with a Yeomen Warders of His Majesties Royal Palace and Fortress The Tower of London (i.e. a beefeater). As we were leaving the gates of the Tower of London, we couldn’t help but notice the striking juxtaposition between the ancient and modern city of London.  This blend of new and old highlights London’s ability to honor it’s rich history while progressively evolving.    

-Alicia, Nneka, and Shannon

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