Lakshmi, a 23-year-old married female with two little kids, met me when she just discovered that she is HIV positive. She was crying not because she was positive but because her husband, Maninder, left Lakshmi with the children at her parents’ house. She knew her husband was not well since he returned from his recent trip. She wanted to be with him during his ailment and ease his suffering. Lakshmi got to know her HIV status just before her surgery. She tried calling her husband several times, but he did not attend. Lakshmi could guess that Maninder is also infected, so he is not answering her calls.
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Lakshmi wanted our help to intervene and ask Maninder to take her back. She wanted us to convey to Maninder that whatever has happened cannot be undone, but they can still spend the rest of their life together. Lakshmi was advised of tests to assess the load of the virus in the blood. She was not interested as her priority was not health but her husband. Her test results were not good, showing up with very less CD4 count, which means a low immunity to fight infection. She was also losing weight with an ignorant attitude toward health.
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Through counselling intervention, we called Maninder to our centre. With head down and no eye contact, Maninder started speaking. He wished he could bring Lakhmi and the kids back but was ashamed and guilt-stricken. He was sick; we convinced him for a health check-up and conveyed Lakhmi’s message and intentions. He was overwhelmed with emotions, and we asked him to wait…And Lakshmi was there. Maninder and Lakshmi were happy to be reunited.
After three months, both came together hand in hand, Lakshmi glowing and Maninder with a smile on his face. They came for routine check-ups, and test reports showed perfect CD4 Counts with no presenting symptoms.
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HIV and Current Scenario
Words like HIV and AIDS are powerful enough to bring fear into a common person’s mind. A condition we do not want to associate with, even in our dreams. This is the impact of the HIV epidemic on the masses, considering that it was once a deadly infection. Yes, it was, as today we have the best treatment available for suppressing the virus and minimising its effects on health. People living with HIV can live as long as others by following a healthy lifestyle, medical intervention, and psychological & social support.
Breakthrough research has developed the vaccination for HIV infection (International AIDS Vaccine Initiative, 2023). Completely cured cases are also documented in some countries (Jingmei Hsu, 2023). In the last ten years, India has shown a 37.4 per cent reduction in HIV infections; from 2010 to 2019. As per 2019 estimates, 23.49 lakh people live with HIV in India, and there is a 66 percent decline in AIDS-related deaths (NACO, 2022). With this trend, we are in reversal mode. It is expected that by 2030, we will have zero infections.
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Why people who have HIV & AIDS are treated differently?
Worldwide, it was difficult for us to battle HIV, considering the novelty of the virus and that we attributed “Sexual transmission” as the only cause of HIV transmission, sidelining the other reasons. And this is the central reason which brought a bad name to those infected with HIV and those who lost their lives to AIDS.
Understanding the difference between HIV and AIDs
Many of us still do not know the difference between an HIV-infected person and a person with AIDS. An HIV infected or person living with HIV is the one who has Human Immuno Deficiency Virus in their body, which could have been transmitted through one of the various transmission modes such as Blood transfusion, used needles and syringes, unsafe sexual contacts, infected mother to the unborn child at the time of delivery or breastfeeding.
A person infected with HIV does not necessarily has AIDS; Acquired Immuno Deficiency Syndrome. AIDS is the stage where the immunity or ability of the body to fight diseases of the person living with HIV or HIV-infected goes down to the point that the person starts catching many common infections easily. The common infections then grow in severity very fast. If the progression is uncontrolled, a person loses their life to the multiple conditions that occurred because of compromised immunity.
- “ART” A Life Full of Hope: Anti-Retroviral Therapy (ART) is given to the infected person, a combination of various drugs that successfully repress the virus. A person with HIV can enjoy life as much as someone with other chronic illnesses with lifelong treatment, physical and mental fitness. HIV to AIDS progression can be delayed for an extended long period. Some HIV-positive People remain HIV-positive throughout their lifespan and never reach the stage of AIDS.
- What is “Stopping.”: Unfortunately, despite the best and free-of-cost treatment available for people living with HIV and AIDS, many people cannot access it or, even if accessed, experience trouble continuing.
- Stigma: The main reason is the stigma attached to HIV and AIDS. Stigma not only affects who is infected, but it also stops many people who may be infected from getting themselves tested.
What are the Real struggles of the people with HIV?
Am I going to die soon?
How will I bear the expenses of treatment?
How will I Adhere to lifelong medical support?
Where should I go to get help?
Whom can I share this?
Will my family be the same with me?
Will my marriage survive?
Can I have a child of my own?
Will I get a job?
Will people be the same to me?
How can I follow safe behaviour?
who will marry me?
will i lose my job?
What if my child is also positive> will they be allowd in school?
what if my child comes near to me? will they get an infection?
will I lose my job?
What is the Good News
NACO (National AIDS Control Organisation)
- Government-run National AIDS Control Programme takes care of all the sections of society. Maximum care is taken to implement the treatment and bring adherence to the treatment by not disclosing the identity of the people infected.
- There are AIDS Control societies at the district and state levels explicitly established for the prevention, testing, treatment, and care of people at risk of contracting and being infected with HIV.
- ICTC (Integrated Counselling and Testing services), PPTCT (Prevention of Parent to Child Transmission), STI (Sexually Transmitted Infections), and ART (Antiretroviral Therapy) centres are gateway from prevention to treatment.
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How do these centres work?
- These centres help people from scratch, that is, confidential, voluntary counselling and testing service, to getting Antiretroviral therapy free of cost.
- The staff is trained extensively to maintain the patient’s anonymity and provide indiscriminatory treatment.
- India delivers the best services through Government and Non-Government Organisations to those at risk and those with the infection.
- NACP (National AIDS Control Programme) – is aimed to set up single-window Sampoorna Suraksha Kendra (SSK), which will provide holistic services to the people at risk and those infected within and outside the health system.
- NACO AIDS APP includes information on all the available services and helps in risk evaluation through simple gamification. This App is available in 12 regional languages.
Rights of People with HIV & AIDS
The legal response of India towards the rights of people is also commendable. The HIV & AIDS (P & C) Act, 2017, was introduced in 2018 to ensure HIV-infected and affected people’s legal and human rights. There are legal provisions that no one can ask about your HIV status at the workplace. No one can discriminate against you based on your HIV status at school or workplace. No one can stop you from visiting places within India.
Provisions and services available
- Free medication and low-cost testing services
- Free Counselling for psychological support
- Matrimonial sites, especially for people with HIV infection (Hivpositivemarriage.com, hivparichaymatrimony.com)
- Indian railway concession for travelling patients,
- Ration supply for below poverty line
- infected people
- Link ART centres
- Positive people network
Organisations working for HIV & AIDS
NGOs like Alliance India, Snehalaya, NAZ Foundation India Trust, Saathi Trust, Humsafar, Udaan… are providing quality services to the ones infected and affected by HIV. Many states have announced their specific prevention and care plans. For example, The Haryana Government recently announced its plan to provide free health facilities like radiological tests to HIV patients under the public-private partnership (PPP) mode (The Tribune, 2023).
Insurance Schemes
ICICI Lombard, HDFC ERGO, and SBI general insurance have a featured insurance plan for people living with HIV. There are other insurance companies providing health insurance (policy bazaar).
How we can support PLHIV (People living with HIV)
- Understanding the need of the infected persons: Understand that the need of the people infected with HIV can be as common as everyone with infection, yet everyone can have their own needs depending on their context.
- Accepting HIV, like other diseases and Disorders: We can prevent future infections by being non-judgemental about HIV and people infected, as we are for other diseases and disorders.
- Being Open and Accepting: We must be open and accepting of infected people collectively. Societal acceptance will add life to the years of people infected with HIV or AIDS.
- Empathy and emotional support: Non-acceptance and negative evaluation will only push at-risk people away from accessing counselling and testing services. If Infected persons do not get the available services, it will increase the burden of AIDS. Treating people with empathy and extending warm support can reduce many sufferings.
