Living with HIV presents both challenges and hope for individuals managing the virus. Effective treatments allow for a normal lifestyle, yet stigma and discrimination persist, impacting mental health and access to care. Personal stories shared during Sidaction’s charity event highlight the ongoing need for awareness and equitable healthcare access. As societal misconceptions linger, the importance of comprehensive support and funding for research remains crucial to improve the lives of those affected by HIV in France and beyond.
Living with HIV: The Journey Towards Acceptance
“Today, HIV does not hinder me from pursuing my passions.” While effective treatment allows individuals to manage HIV, it is crucial to recognize that a complete eradication of the virus remains elusive. Significant strides are still needed in prevention, screening, and access to healthcare, even in France. This vital message is being emphasized by the Sidaction association in light of several personal stories shared during the 31st edition of their annual charity event, which takes place this weekend and is broadcasted across radio and television platforms.
Personal Experiences and Perspectives
“I can travel, enjoy my meals, work, and embrace my children. The most challenging aspect is adhering to my medication, which constantly reminds me of my HIV status. Nevertheless, I hold on to hope that researchers will discover a cure. Whether I will see it in my lifetime remains uncertain,” reflects Geneviève, 41, during her conversation with the association. Despite losing some friends, she cherishes the support from those who remained, especially after initially concealing her HIV status from her family for two years.
“The daily routine of managing my treatment and its side effects weighs heavily on me. However, I am maintaining my health, as my HIV is well-controlled,” shares Sophie-Elena, 35. She proudly notes that she was able to breastfeed her nearly seven-year-old son, who is HIV negative. “I hope for simplified treatments, innovative injectable therapies, and more tolerable medications. Most importantly, I wish for equitable access to these treatments for everyone,” she adds, recalling her infection in Romania as a baby through a syringe during hepatitis B treatment.
Marjorie Mailland, coordinator of the Marseille Sud Health Network, highlights the persistent issue of discrimination associated with HIV. “The stigma surrounding HIV often intertwines with personal matters, particularly sexuality, a topic that is not always openly discussed,” she explains. Discrimination can arise in medical settings or during romantic relationships, leading many individuals living with HIV to adopt ‘locking’ strategies, confiding only in family or physicians. This secrecy can obstruct access to necessary care and contribute to social isolation, which can be detrimental to mental well-being.
Sandrine Fournier, director of the funding department for Sidaction, notes, “Social attitudes are not evolving at the same pace as medical advancements.” Currently, approximately 200,000 individuals in France live with HIV, with around 5,500 new cases detected in 2023. “While medical progress is significant, social perceptions lag behind. For instance, treatment has evolved from 30 pills a day twenty years ago to a single pill with minimal side effects today,” she explains. “When diagnosed early, life expectancy for those with HIV is now comparable to that of the general population, and we can consider HIV a manageable chronic illness,” she adds.
However, societal perceptions still reflect lingering misconceptions. “Regrettably, we observe a decline in social indicators year after year, largely fueled by persistent false beliefs,” Fournier warns, emphasizing that individuals who unknowingly transmit HIV make up a significant portion of new cases. The psychological burden of secrecy is substantial for those living with HIV. “HIV has become synonymous with secrecy; often, the medical office is the only place where individuals feel safe discussing their condition,” she stresses.
Fournier also highlights how stigma impacts various demographics disproportionately, particularly women, particularly women of color, and transgender individuals. “Interestingly, elderly patients face their own unique challenges. Aging with HIV complicates transitions into nursing homes, a reality identified through recent studies,” she explains, lamenting the enduring fears rooted in ignorance. “A brief two-hour awareness session could effectively address these misconceptions,” she suggests.
As a significant portion of the 200,000 individuals living with HIV in France are expected to be 60 years or older within five years, there are crucial health considerations. “The virus induces chronic inflammation that can accelerate aging, and many have endured toxic treatments affecting their liver and kidneys,” she elaborates. “Data indicates that HIV-positive individuals often experience increased social and health challenges, including heightened risks for cancers, cardiovascular issues, and bone fragility,” she cautions, underscoring the urgent need for attention in these areas.
In light of these challenges, Sidaction advocates for comprehensive consultations for patients aged 50 and above to assess their fragility and vulnerability. Currently, those with controlled HIV typically see their infectious disease specialist once or twice a year for standard check-ups focused on monitoring biological markers.
Donations to Sidaction, made possible through phone, SMS, or online platforms, are vital for funding research, care, and support initiatives for individuals living with HIV, both in France and internationally.