TESTIMONIALS. The worrying precariousness of elderly AIDS patients

This week, Philippe Wozniak, 56, received a call from his bank. Sir, your overdraft has exploded, we will have to refuse your last checksays the fifty-year-old, replaying the call. It was an Auchan check for €40, not €150! What will I eat ?

The roots of his precariousness date back to 1989, the year in which he learned of his HIV status. Six years before the arrival of the first treatmentsthe human immunodeficiency virus (HIV), responsible for page, was a promise of death. So a young 23-year-old suburbanite, he had lived to the full since he was 16-17 the golden age of sexual freedom, Parisian nightlife and “I don’t care” » . There was a lot of talk about AIDS in the gay community, I took a test when it started to turn red around me.

A social care problem

What followed was a bumpy career, with periods of work, periods of illness and intense fatigue. All related to HIV and treatment side effects. Too tired to work for ten years, after 27 years of quadritherapy”, Philippe lives with a disabled adult allowance (AAH) of €900, assistance from the city of Paris of €114, and recognition as a disabled worker of €89. After the rent, the food and two three on the side, there is nothing.

Among the elderly AIDS patients, Philippe is far from being the only precarious one. However, studies on the social situation of HIV-positive people are rare. In 2010, vih.org claimed that in France, 47% of people with HIV live on less than €760 per month. The last survey shared by the Sidaction association dates from 2013. It is difficult to have recent data, we need a new survey to know the social needs says Corinne Le Huitouze, head of the Aging with AIDS program at Sidaction.

For her, what sins the most is social care. An observation shared by Camille Spire, the president of the association Aides : The problems of precariousness increase for aging people with HIV.

An inability to project

For Jean-Paul Lacaze, who will celebrate his 60th birthday in July, everything changed in 1985, when he opened an envelope containing the word “positive”. The young 23-year-old Girondin then navigated on sight between food jobs and intravenous drug use. My doctor advised me to stay with my parents so that they could enjoy my last months.

For 11 years, he lived on borrowed time, in the dark seeing so many friends leaving. It was eleven years of jobs, CDD, unemployment, internships and training that I accumulated, always on the short term. It was impossible for me to project myself. When I was asked where I saw myself in five years during job interviews, depending on the mood I wanted to answer alive or dead.

He ended up having the baccalaureate at the age of 32 in 1994, then a bac +3 diploma in 1998 at the University of Bordeaux. The year 1996 marks the end of his fears of imminent death, but not of his doubts. I still have in my heart this doubt of what I will become, of what I am capable of doing. Before, I told myself that things would improve, but today I know that when I retire, I will pay for the consequences of what I experienced previously.

“Life is not so interesting anymore”

With his many years 80% incapacity and AAHhe has no illusions about the amount of his future pension: I have a derisory number of quarters, it will be the minimum old age. Between his rent, food and other expenses, he sees a sad future taking shape: when you have to eliminate everything that makes life salty, leisure and culture, life no longer has too much interest.

Also read. MAINTENANCE. Faced with AIDS, “we are fighting against the tide to say that everything is not settled”

An inability to project themselves common to all those who lived through these dark years. Mary Bassmadjian, a 62-year-old Marseillaise, worked from 1986 to 1996 hiding her HIV status. Going to work thinking we were going to die was difficult, it slowed down my professional impulses.

She then suffered a period of seven years during which she could not work. I had to be treated, I was extremely tired. The sixty-year-old now thrives by sharing her knowledge of HIV, as a patient partner.

Expensive dental problems related to treatments

While accompanying other AIDS patients, Mary observes the side effects of the treatments, including premature aging with economic repercussions.

Many suffer from osteoporosis and bone decalcification. This bone weakening can lead to joint and dental problems, which are often costly and poorly reimbursed. Tim, 57, pays the price. My teeth are loosening and falling out. It is recurrent, very disabling and badly reimbursed.

Also read. MEET. The anger of Didier Lestrade, who “gave his whole life against HIV”

A few years ago, he was able to afford a first round of dental work. Luckily, I made quite a bit of money that year, €30,000.00, and was able to take €15,000 for my teeth. But this time, he doesn’t know how to get out of it. Not having teeth is very degrading, I can’t sleep at nighthe says, determined to find a solution.

“We are happy to have survived”

We, HIV-positive people, are happy to have survived, so we do not really measure the extent of the damage suffered in the long term.. For a long time, denial was added to his survivor syndrome, which he describes as a mixture of guilt, questions and fears of being immersed in the real world.

For two years, Tim has been an employee of Aides, for whom he does prevention. He regrets that the company has stopped seeing AIDS as a lever to change thingsdespite the challenges raised by the disease in terms of hospital care, sexual health, cancers, eyes, teeth or even bones. Historically, the challenges of AIDS are also challenges to improve the lot of the most vulnerable, economically and politically: minorities, migrants, the very young and the too old!

By exposing their difficulties or asking for help, many seem to fear that public opinion sees in them a desire to become privileged. Jean-Paul reminds us that there are other forms of disability where people end up in poverty, and that we should review compensation and social minima. With a question in the background: Should we leave people like us in precariousness for the last years of their lives?

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