Living Forward: A Guide to HIV+ Diagnosis

This article was written in consultation with Dr. Swathi SB

Receiving an HIV diagnosis can feel overwhelming, a moment where the world seems to shift on its axis. But take a deep breath. An HIV diagnosis is not a life sentence. It’s a turning point, a call to action, and the beginning of a journey towards managing your health and living a full, healthy life. There’s no room for guilt or panic. Focus instead on the strength within you and the support that surrounds you. With proper and consistent care, HIV is a manageable chronic condition, not a death sentence.

Disclosure and Responsible Action

The first step is to empower yourself with knowledge. Remember, you have the right to a detailed explanation of your situation from your healthcare provider. Following this, it’s important to inform anyone you’ve had sexual contact with or shared needles with, so they can also get tested. Take your time for this sensitive process and take the support of your health care provider, if needed. This is not about blame, but about responsible health management for everyone involved.

Essential Tests and Where to Find Them

Next, you’ll need to confirm the diagnosis and assess your overall health before appropriate treatment is started. This typically involves:

• CD4 count: This measures the strength of your immune system.
• Viral load test: This measures the amount of HIV in your blood. (as the treatment starts, viral load reduces and becomes undetectable)
• Resistance testing: This helps determine which antiretroviral therapy (ART) medications will be most effective for you. This test may not be routinely necessary
• General health check-up: This includes tests for other infections (like syphilis, Hepatitis B, Hepatitis C, TB) and assessing your overall well-being (hemoglobin levels, sugar levels, status of liver, kidney function etc).

These tests (except the resistance testing) can be done at government-run Integrated Counselling and Testing Centres (ICTCs), which offer free testing, or at private labs. ICTCs are usually located in district or general hospitals and you can find a list of ICTCs across India on the National AIDS Control Organisation (NACO) website. Here is their state-wise testing center list. While testing at ICTCs isfree, private lab costs can vary significantly, ranging from ₹1,000 to ₹5,000 or more for a comprehensive panel. 

For immediate assistance in finding your nearest ICTC, you can also contact the highly responsive NACO helpline at 1097. You will be asked about your city, district, etc. to help you locate an ICTC. At the ICTC, you will be tested again and then directed for treatment.  You may be asked about how you acquired HIV, but you have the right to withhold this information, and helpline staff will not press you further.

Confidentiality and Legal Protection

Confidentiality is paramount, and your privacy will be protected. It is extremely important that your HIV status remains private unless you choose to share it. In India, discrimination on the grounds of HIV status is prohibited under the Human Immunodeficiency Virus and Acquired Immune Deficiency Syndrome (Prevention and Control) Act, 2017. This act protects your rights regarding employment, healthcare, education, and other areas and prohibits mandatory testing or testing for your HIV status without your informed consent. It also ensures that your medical information is kept confidential. It is illegal to discriminate against you because of your HIV status. You can find more information about your rights and remedies under this Act here. 

Accessing Free ART (anti-retroviral therapy) and Ongoing Care

Accessing ART is crucial for managing HIV. In India, ART is provided free of cost through government-run ART centers. You can find a state-wise list of these centers on the NACO website. The process involves registering at an ART center, undergoing a medical evaluation including the above-mentioned tests, and starting the prescribed medication regimen. ART medication works by suppressing the virus and keeping the viral load undetectable, allowing your immune system to recover and preventing the progression of HIV to AIDS. This also prevents transmission to other partner/s. It’s vital to adhere strictly to your medication schedule to ensure its effectiveness.

Community Support and Emotional Well-being

Remember, you are not alone on this journey. Support organisations in India provide counseling, guidance, and community for people living with HIV. These organizations can offer valuable emotional support and practical assistance. They can also aid in fighting the stigma surrounding HIV. Support groups and online forums can provide a safe space to share experiences and learn from others. One such support group is the New Delhi LGBTQIA+ Center’s Be the Change support group for queer people living with HIV, for example which meets in person every first Sunday of the month.

Lifestyle and Long-Term Health

Maintaining a healthy lifestyle is also essential. Like managing any chronic condition, this includes:

• Eating a balanced diet
• Getting regular exercise
• Avoiding smoking and excessive alcohol consumption 
• Managing stress
• Getting enough sleep
• Maintaining active social life and supportive relationships

Consistent follow-up and goals of care

The ART medication regimen has tremendously improved over the years with fewer side effects. Regular check-ups with your healthcare provider are crucial for monitoring your health and adjusting your treatment as needed. Usually viral load, CD4 and other blood parameters are tested at these follow up check-ups. It is important to discuss any side effects or issues that you might face with the treatment so that your healthcare provider can optimize your regimen. 

The goals of treatment would include maintaining your viral load at undetectable levels and having a good quality of life. This will not only ensure that your health and immunity are at  optimal levels but also prevent transmission through sexual routes (undetectable=untransmittable!). Follow up care would also involve openly discussing your concerns be it related to the medical condition or the social impact of the infection. Vaccines like HPV, hepatitis B can also be considered in these visits. With consistent care and a positive outlook, you can live a long, healthy, and fulfilling life. Persons living with HIV with consistent care can have children safely, breast feed and lead fulfilling sexual lives. 

Taking Control and Moving Forward

Navigating an HIV diagnosis can be challenging, but it is certainly manageable. Take each step with courage, seek support, and remember that you have the power to live a healthy and fulfilling life!

Resources:

• National AIDS Control Organisation (NACO): https://naco.gov.in/
• World Health Organization (WHO) HIV/AIDS information: https://www.who.int/news-room/fact-sheets/detail/hiv-aids
• Human Immunodeficiency Virus and Acquired Immune Deficiency Syndrome (Prevention and Control) Act, 2017: https://naco.gov.in/sites/default/files/HIV_AIDS_Act_2017.pdf

About the author

Afreen’s background encompasses participatory research, health communications, and advocacy. At Safe Access, their work ranges from Sexual and Reproductive Health and Rights (SRHR) and mental health policy, to program tracking, and partnership-building, all aimed at improving health outcomes for the LGBTQIA+ community. 

Dr Swathi SB is a Primary care & HIV physician and public health professional. She advocates for health as a right and focuses on addressing health inequities through research, implementation and strengthening health systems. She explores the intersection between health, gender, and sexuality. She has worked with women in sex work, and transgender communities delivering primary care and understanding the issues related to the provision of comprehensive HIV and primary health care.