From life ending
to life changing

Jonathan Blake became ‘patient number one’ at Middlesex Hospital, one of the first people diagnosed with HTLV-3 (later known as HIV) in the UK. This was the start of an avalanche of diagnoses and deaths.

"I was 33 and given a terminal diagnosis. I felt very isolated and vulnerable. Amazingly I am still here but there is an emotional side that needs to be addressed, along with continuous testing and monitoring."

Jonathan Blake
HIV activist and HIV positive

Two research groups, one led by Robert Gallo in the US and one by Luc Montagnier in France, published their discoveries separately in Science. Both groups had discovered the same retrovirus behind Human Immunodeficiency Virus (HIV).²

Ryan Wayne White, an American teenager living with haemophilia, was infected through a contaminated blood transfusion and given only six months to live. After being rejected from school because of his AIDS diagnosis, Ryan became the face of HIV/AIDS. Doctors knew he posed no risk, but HIV/AIDS was feared and poorly understood by the public so many parents and teachers demonstrated against his return to school. The battle attracted worldwide attention, with Ryan becoming a celebrity and advocate for HIV/AIDS research and public education.

Before Ryan, most people thought AIDS was an illness affecting only the gay community. This stigma shifted as Ryan (and later other prominent HIV-positive people) began to openly advocate for more AIDS research and public education to address the epidemic.

Once HIV was identified, companies began to develop tests that could detect the antibodies found in the blood after being infected. The first HIV antibody screening assays using Enzyme-Linked Immunosorbent Assay (ELISA) technology were licensed by the US Food and Drug Administration (FDA). Later in 1985, the insurance companies started using these tests to assess an individual's risk of developing AIDS. As it takes time for most individuals to develop antibodies to HIV, these tests only become positive 6 to 12 weeks post infection, leaving a window of uncertainty and delay.

Every single world region had diagnosed at least one case of AIDS by the end of 1985.³ To build scientific knowledge in the fight against HIV, the World Health Organization (WHO) and the US Department of Health hosted the first International AIDS Conference in Atlanta, US.

As more news about AIDS hit the media, this public information film/ad was released in the UK. Its tagline, Don’t die of ignorance, compounded fear and prejudice. In April 1987, at the opening of the UK's first purpose-built HIV/AIDS unit, Princess Diana shook the hand of an infected man without any safety precautions. With this simple gesture, she helped break the myth that HIV/AIDS could be transferred by touch, and showed that the disease was a condition needing compassion and understanding, not fear and ignorance.

The FDA approved an antiretroviral drug known as a reverse-transcriptase inhibitor. It works by slowing the replication of the virus. The drug had been fast-tracked for approval – people needed immediate help – and initial responses to the drug were positive. Lives were prolonged only slightly, however, as the virus mutated and grew resistant to the treatment.

Surprising his doctors, Ryan lived five years longer than predicted, but sadly died one month before his high school graduation on 8 April 1990. Shortly after his death, US Congress passed a major piece of AIDS legislation, the Ryan White CARE Act.

Other key celebrity announcements followed, and other famous people infected with HIV included actor Rock Hudson, tennis player Arthur Ashe, singer Freddie Mercury, writer Isaac Asimov, French philosopher Michel Foucault, designer Tina Chow, Russian dancer Rudolf Nureyev, and Portuguese singer António Variações – illustrating that AIDS is a disease that knows no national boundaries.

Watch video "Legacy of Care" to learn more.

A diagnostic test kit using polymerase chain reaction (PCR) technology was developed to help healthcare professionals detect within a few hours the presence of HIV using the virus’s DNA.⁴ This more sensitive test means diagnosis of patients in earlier stages of infection is possible. Moreover, immediate diagnosis leads to treatment starting right away, and gives the babies born to HIV-infected mothers a better chance at survival

"PCR technology combined with automation led to highly standardized tests with short turnaround time for HIV detection and viral load determination - this was a really big milestone. Extracting HIV RNA had proven difficult because RNA is such an unstable compound. To work on these early inventions, and then later on developing the dual target HIV viral load assay meant we were working at the forefront of HIV testing and that was really exciting!"

Dorothea Sizmann
Lifecycle Team Project Leader for Infectious Diseases, Roche Diagnostics

This second type of antiretroviral medicine suppresses the virus by blocking an HIV enzyme known as protease. Without protease activity, no copies of the virus can be made, interrupting the HIV life cycle. Protease inhibitors are still used today in combination with other antiretrovirals.

Quantitative diagnostic testing determines the amount of HIV virus circulating in the body. By measuring viral load, doctors can gauge treatment response. Our understanding of how the virus worked then changed - we learned it did not stay dormant, but quickly replicated to build strength, which meant asymptomatic patients could still be infectious. This is why initiatives like the Global Access Program (launched in 2015) are important for providing HIV viral load testing to countries hardest hit by the epidemic.

In 2002, Kami, the first HIV-positive Muppet, was introduced to South Africa’s Takalani Sesame (one of Sesame Workshop’s many international projects modelled after Sesame Street). While normalising the face of HIV and AIDS, Kami provides a life-affirming remedy to the AIDS stigma. She helps children understand how it is and isn’t transmitted. By touching and interacting with those who are HIV-positive, Kami shows that normal interactions are nothing to be afraid of. It’s a very important message in South Africa, where denial and cultural misunderstanding have been blamed for the country’s alarming infection and death rates throughout the 2000s. Kami later starred in a UNICEF public-service announcement about AIDS and HIV education, appearing with Oprah Winfrey, Laura Bush, and Desmond Tutu.

A new approach to preventing the virus from replicating was developed. By blocking HIV from entering healthy cells where it makes the copies of itself, viral load can be reduced enough to suspend the chain of infection.

AIDS became the most important and dedicated cause of Nelson Mandela’s foundation. He launched a charity, to which he gave his Robben Island prison number, 46664, to raise awareness and funds through huge international concerts.

Mandela’s admission in 2005 that his son died from AIDS helped create awareness and initiate a discussion of the taboo in Africa. He went on to set up the World AIDS Trust with former US President Bill Clinton.

There are two types of the virus, HIV-1 and HIV-2. Most HIV positive people have HIV-1. It is more virulent, more easily transmitted and the cause of most HIV infections globally, about 95%. HIV-2 is less transmittable, has a slower prognosis and is largely confined to West Africa.

Physicians need to know the difference between the two forms as they are unique virus strains that require specific treatments. To help navigate this complexity, Roche launched a qualitative diagnostic test that differentiates between HIV-1 and HIV -2 infections in 2017.

This new technology, the size and shape of a credit card, provides a simple way to collect blood samples and protect them from contamination despite heat and humidity. The samples are used to assess how much of the virus is in the blood - the viral load. This viral load testing measures whether treatment is working and guides clinical decisions to decrease transmission. The innovation behind the card is that it doesn’t require refrigeration. Its launch has meant increased access to HIV testing for patients living in remote areas such as rural Africa because a sample can easily be transported to labs in larger centres for reliable qualitative testing.