HIV ALSO SAVES LIVES

What does the campaign consist of?

CASDA (the Spanish acronym for Citizens' Association Against AIDS in Castellón) is celebrating its 25th anniversary this year. 25 years fighting for the rights of people affected by HIV and/or AIDS, for their care, for the social normalisation of the disease and for its prevention throughout society. And they are doing so with a very special campaign that we invite you to join.

Organizations that respond to HIV through rapid testing can join the campaign by putting their grain of sand spreading the action to all those people who come to the realization of the rapid test, inviting them to contribute to it by making a small contribution.

They can also collaborate with the dissemination on their different platforms, social networks and publication of posters and leaflets in their different physical spaces.

On 23 August 2013, Stephen Crohn took his own life in New York City. According to his sister, "it was out of guilt at seeing all his friends around him die and not him". Crohn's, dubbed in the American press in the late 1990s as "the man who can't get AIDS", had a natural mutation in the Delta32 gene in which his lymphocytes have a "broken" CCR5 co-receptor, so the keys that the AIDS virus uses to enter and infect the immune system are of no use to him. With "only" about 60% immunity to the virus, his mutation facilitated the understanding of this entry mechanism and led to new anti-disease drugs such as Maraviroc.

The reason for using "only" 60% in quotation marks is that, a few months after the news of Crohn's suicide, a new genetic defect was discovered, a mutation in the Transportin 3 gene that gives more than 90% protection against HIV to those who have it. This mutation causes an ultra-rare muscle disease, called Limb-girdle Muscular Dystrophy 1F/D2, which affects less than a hundred patients, all belonging to the same family. A degenerative, genetic and hereditary muscular disease that causes muscle weakness to the point of making it compulsory to use a wheelchair and in its final stage, affecting internal organs and causing death. The patients created the Conquistando Escalones Association and have been working tirelessly for years, despite their health and mobility problems and despite the lack of institutional support, to pay for medical research to find treatments for them and also new ways of treating the millions of people affected by HIV.

Dr. José Alcamí, Director of the AIDS Immunopathology Unit at the Carlos III Health Institute, Scientific Director of the HIV Unit at Hospital Clínic and Coordinator of the Spanish AIDS Research Network (RIS) is one of the leaders of the research groups involved and widely known in the associative world of the fight against HIV. He explains:

"The genetic defect in Transportin 3 was identified in 2014 by our fellow neurologists and neuroscientists researching rare diseases, but those of us working on HIV knew that Transportin 3 is essential for HIV infection. We verified in our lab that patients' lymphocytes are highly resistant (over 90%) to high-dose HIV infection "in vitro".

What role does transporter 3 play in HIV infection? It transports the virus along pathways leading to the nucleus, camouflages it so that it is not recognised by intracellular immunity, allows it to cross the nuclear boundary, and finally guides it to the sites where it must integrate in order to multiply. In short, without Transportin 3, HIV is dead. The discovery of CCR5 led to the discovery of a new family of drugs and we are trying to do the same with Transportin 3. If we succeed, what would be the consequences for the virus? Probably fatal: as it would not be able to climb the "TNPO3 line", it would not be able to reach the nucleus or cross the border, but also, as it would not be "camouflaged", it would be recognised by the cell's recognition mechanisms and destroyed. A few patients, an ultra-rare disease is showing us avenues of research we never imagined. Once again, we see how science is a territory without borders or limits. As in this case, research into a rare disease is helping us to develop a treatment for millions of HIV-infected people.

(click here to watch an explainer video about the research)








Together with Dr. Alcamí, Dr. Vílchez's team from the Health Research Institute Hospital La Fe; Dr. Artero's team from the Department of Genetics of the University of Valencia; Prof. Angelini from the San Camillo IRCCS Hospital of Venice, a Research Centre specialised in neurorehabilitation; Prof. Cenacchi's team from the University of Bologna; Dr. Udd from the University of Bologna; Dr. Udd from the University Hospital of Tampere, in collaboration with many other laboratories from countries such as the United Kingdom, France or Belgium, among others.

On this 25th anniversary of CASDA we appeal to help Conquistando Escalones Association. To help them to save their lives. To help them defray part of the research costs (dedicated staff, consumables, etc.) that they pay for by carrying out events and campaigns relentlessly despite their illness. And to be part of the discovery of new treatments to help the millions of people affected by HIV.

You can donate until 1 December, World AIDS Day. The names of all donors will be included in a box that will be designed to symbolise the union in the fight against Limb-girdle Muscular Dystrophy 1F/D2 and HIV.

Financial objectives of the campaign

CASDA is 25 years old so the initial goal of the campaign is to raise €25,000 for medical research. Beyond the numerical symbolism, this amount would be used to pay for the next few months of research in which medical drugs that have already been shown to work in other models characterised by the Transportin 3 mutation will be tested in patients' cells. Anything over and above this amount will be welcome and greatly appreciated. Conquistando Escalones Association was founded in May 2015 and it was able to start paying for the first steps of the research in early 2016. Since then it has raised and paid €460,000 to the different research centres. By the end of 2022, it will have invested more than €500,000. Current annual expenses for personnel, material and maintenance exceed €100,000 per year. If the fundraising and research goals are achieved, the first human clinical trial could be underway by the end of 2023 or during 2024. The trial amounts to €100,000 per medical drug. Therefore, any help is welcome and appreciated.

The aim is to stop Limb-girdle Muscular Dystrophy 1F/D2, to save the lives of sufferers with medicines that could also help against HIV. And in parallel, to continue the research about how Transportin 3 works in order to find not only palliatives, but also a definitive cure.

The campaign's goal of €25,000 is ambitious but we trust in the general solidarity of Spanish citizens and the reach and strength of the network of associations fighting against HIV. Thanks to your help we can achieve it, and why not, surpass it!