Do they want to survive or they want to live quality life-new challenges of HIV survivors
The AIDS epidemic has been increasingly recognized as a major health and socioeconomic problem, not only in the United States and Africa, but also in the rest of the world. The face of the epidemic has changed. The role that mental health provider’s play has also significantly grown as the epidemic continues to spread... Prior to the introduction of Highly Active Anti-Retroviral Therapy (HAART) and other advances in HIV care, the patients faced issues that related to death and dying. These advances brought with them renewed hope and resurrected lives. The patients fought with issues related to living new lives with HIV no longer an imminent death threat. In the third decade of AIDS, the struggles of the post-HAART era continue but bring with it more challenges.
The foremost challenge comes with longevity and living with a chronic disease like this is to continually having a perfect mental balance. As the patient lives
Longer, times come when he/she thinks that going to health care providers repeatedly is like going to a ration shop with a limited budget. Patients start getting tired of medicines as well. I am reminded of one NS a good well settled advocate who after surviving the fatal opportunistic infection as a result of HIV kept on doing well but after about 2 years when he did not report to me for regular checks. I called his home and to my utter dismay I was told that the man committed suicide as he was fed up taking medicines. There are many NS who at one time or the other during their treatment over the years broke down and actually needed psychiatric support.
Mental health providers need to familiarize themselves with these issues so that they can help HIV patients cope with this devastating disease with a positive attitude.
Take the case of VK, (name changed) who faced it and almost escaped the clutches of HIV despite suffering from cryptococcal meningitis. VK after recovery and ARV’s for sometime started going to work. His relatives thought he is out of the HIV jungle. The guy was married to his fiancée with lots of pomp and show. He kept her in dark regarding the reality of his disease and kept on using barrier protection during sex .A year passed. The girl and the girl’s family started becoming impatient and wanted a child. The reality of HIV gave the strongest jolt to the girl; who wanted to compensate this loss with the happiness of motherhood. Today she wants to produce a child even at the risk of getting herself infected with the virus. The assisted reproduction and techniques like Sperm washing can come to the help of the couple, of course but is it not a new challenge to the medical community after ARV’s.Another boy’s parents advertised thru papers for a match, got him married by hiding his HIV status and now want that they should become grand parents without the girl still knowing the reality. He is a B.Tech,MBA, serving a MNC after surviving HIV thru ARV’s.He is son of a retired bureaucrat-now not only the family but also the boy want to enjoy the marital bliss.LD became a widow at the age of 21 after marrying her families chosen boy. Brothers started supporting her, with medicines even when they were really costly. Sister in laws (Bhabhi’s) however used to taunt the widow sister always. Result-she was given a sympathetic shoulder by an employee of the brother and lo both fell in love with each other to the extent of boy willing to marry the girl despite HIV. The news came as a shock to brother; he refused any further help if she marries the servant of his. The boy was adamant and no amount of counseling could change his mind. The marriage took place and now they want free ARV –ARV center looks at the couple in suspicious manner- disgraced they do not want to go there. And now want a normal married life with a child too.
The ARV’s were doing wonders with him-SS, but after few years he started looking week as his cheeks were going in. The doctors said it is lipodystrophy.But he could not either change to costly meds or tolerate friends pointing towards his appearances. He stopped ARV’s.Result he is now talked in past tense by the same friends.
As per a very common tradition of Punjab I have tried to counsel many families (successfully in some only) to desist marrying the widows to younger brothers.
Technically also ,over the years when first line regimens fail( which can happen sooner or later in almost majority of HIVers,the second lines (costlier and more toxic drugs) will remain a cause of worry.
This gentleman survived HIV but became blind because of CMV retinitis an Opportunistic infection during the course of his ailment. Now he has to learn new ways to live with his handicap. And mind you he is not alone; there are quite a few like him. The reason the therapy Of CMV retinitis is much costlier than the ARV’s.
To treat fungal infections of the brain, ones pocket gets a drain, if that does not happen than again one has to learn to live with various handicaps.
To summarize longevity brought by ARV has and will bring new issues also which will need help from not only medical fraternity but also from the society at large.
It is not only the quantity but also the quality of life which matters.
Dr.Rakesh Bharti,
MD,AAHIVS
HIV Specialist Designate by American Academy of HIV Medicine
BDC Research Center,
27-D,Sant Avenue,
The Mall, Amritsar.
143001
Telephones 2277822, 2278522; 9814044213
Email-rakesh.bharti1@gmail.com.
