MAINTENANCE – The life expectancy of people with HIV is getting longer, but care does not follow. Apart from prejudices, the offer has not adapted to this growth.
Almost one in five HIV-positive people is aged 50 or over in France. Antiretroviral therapy has lengthened the life of infected patients. This aging causes changes in their care: new pathologies appear. But beyond the medical aspect, the social aspect is becoming more present. Because it is not only the health of HIV-positive people that is fragile. This population is socially vulnerable: unemployment is notably higher there than in the general population. Alain Bonnineau can attest to these difficulties. Vice-president of the AIDES association, he has been living with the virus for thirty years. On the occasion of World HIV Day, Why actor questioned him.
How do aging patients live?
Alain Bonnineau : Living conditions are extremely variable. These people have in common that they have lived for a long time under treatment. They share chaotic professional or emotional stories. Breakdowns related to treatment and opportunistic diseases have made it difficult to build a career or a family. Many of these people are lonely because they have lost their companion. They are also in an important precariousness: they could not make a career, or with difficulty. The third common element is habitat. Keeping a home is complicated. Many end up with social minimums, which does not allow quality living conditions.
Do these difficulties affect care?
Alain Bonnineau : It is true that care is 100% covered when it is linked to HIV. However, complementary comfort treatments do not fall within this framework even though they are necessary to maintain a good quality of life. Access to these drugs, which is complicated with minimum social benefits, must be facilitated. Complementary therapies such as acupuncture and psychology are not taken into account. Optical and dental care are very little covered. But since the financial situation of people with HIV is often precarious, it is even more complicated for them.
Has society evolved along with the treatments?
Alain Bonnineau : She was pushed around. These people were not scheduled to live that long. No device has taken them into account. AIDS was initially a disease of young people. 30 years later, he has reached his sixties. People live better thanks to treatment. But there are more and more and the contamination remains important.
Does the assumption of responsibility affect it?
Alain Bonnineau : The company has not provided for the reception arrangements for people who have had complicated life courses, and find themselves destitute. In 2013, we organized a consensus conference with stakeholders in the health, virological and gerontological sectors, to try to anticipate this increase. These people have heavy treatments. To enter nursing homes, the cost of their support will be raised. The cost of care is often an unacknowledged reason for the exclusion of elderly HIV-positive people from collective schemes. If we do not do work to optimize this quality of reception, to mobilize the actors of common law, it will remain complicated. Today, we must take up this question.
How to improve things?
Alain Bonnineau : It is also necessary to integrate in the course of the actors whom the seropositive people do not necessarily think about. A patient only knows his virologists at the start. As he ages, he meets other actors – urologists, oncologists for example. They must be ready to welcome HIV-positive people who, as they age, come closer to the reality of the general population. We are faced with cancer, diabetes… and we find ourselves in environments for which we were not prepared. In front of us, the professionals do not have a good grasp of the problem and do not take into account the journey of an HIV-positive infected in the 1980s and surviving today.
How does this translate?
Alain Bonnineau : The actors of everyday life, present in the 1980s, dealt with tired people, almost at the end of their life. Today, they are in a life course but not at the end of their life. They still have disabilities and home help workers, who have deserted this public, must once again take care of these people. Concerns about the transmission of the virus are reappearing. They no longer need to be, but they remain brakes. A lot of training and awareness of medico-social actors is needed. Then, we must also train and sensitize aging people on the rights open to them, and perhaps reconsider administrative support.
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