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Jun30

Risks Versus Rewards:Why People With HIV Volunteer for Cure Research

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A recent survey of people living with HIV in the United Kingdom found that more than half would participate in a clinical study to develop a cure for HIV, despite this posing a risk to their health.
There is currently no cure for HIV. But a number of clinical trials around the world are exploring new approaches to curing the disease. There have also been a handful of highly publicised cases where individuals achieved a type of HIV "remission" following medical intervention.
But participating in clinical trials that could take researchers closer to a cure for HIV comes with risks. In some cases, participants with HIV may be required to stop using antiretroviral treatment for a period of time. This may increase their viral load and can potentially lead to drug resistance.
Antiretroviral treatment is central to the long-term management of HIV. It helps prevent damage to the body's immune system, ensuring people with HIV can remain well and live a normal life. It also reduces the risk of transmitting the virus to others.
Participation in a HIV cure trial will generally require blood testing and can involve invasive procedures such as tissue biopsies. Participants may also experience side effects from the drugs or treatments being trialled.Along with these risks, participating in an HIV cure trial offers few benefits. Most trials are in the early, experimental, phases. Participation will offer no therapeutic advantage and the likelihood of an available cure is still a long way away.
In most countries,including Australia and the United Kingdom, there are strict guidelines on offering payment for clinical trial participation, so there are usually no financial incentives.
So why would someone choose to do this?
For many people, it is simple altruism. The UK study, as well as a similar study in the United States, found a desire to help others was the primary factor motivating people's willingness to participate in HIV cure trials.
For some, this was about making greater meaning out of their own experience of HIV by contributing to scientific knowledge and improving options for future generations.
Science and medicine relies on altruism in a number of areas. Altruism is central to the safety and success of blood donation programs in many countries. Similarly, many clinical trials of new medicines or therapeutic interventions require altruistic participation of people who will not benefit personally from the study.



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