It Is Time To Remove Stigma Attached To HIV And AIDS

You’ve got this, she whispered to herself when she walked into the office. It was the final stage of the employment process. She had aced the first two rounds. Completed the pre-employment health check-up. All that remained was the final meeting with the senior management.

It had taken her a long time to get here. Her path had not been easy. Failure after failure peppered her journey as she had struggled for a seat at the table in a world ruled by men. But this was about to end. She felt calm and secure. Her personal life was settling as well. She had been seeing him for a while and finally decided to move in with him a month ago. A progressive man who appreciated her career and her academic drive.

She noted that she had been made to wait for over an hour now. She frowned looking around her and realised that a few people in the office were staring at her and whispering. She was a little anxious and was relieved to see the face of the secretary who greeted her. She had her deadpan expression; one that she had come to recognise was Fort Knox to any emotion, whatsoever.

As she was led into the room she saw two of the senior members of the management. Only two. Not the whole team she had met the last time. “We are sorry, however, as you know there are many suitable candidates and unfortunately only one position is available”. She only heard trails of the sentence.

“But” she blurted out, “I thought everything had gone so well the last time we met“. She bit her tongue. She had read every link and book imaginable to prep for the interview of a lifetime. Including the parts that detailed the grace one should have upon rejection. She fought back tears as she said her goodbyes.

Walking down the corridor she heard the whispers again. But how could they have known of the rejection, ahead of time, she wondered. In the cab, she went over and over every minute of the last meetings. The friendly welcoming emails and several phone calls. This was a company known to hire on merit. So what had gone wrong?

She tried his number again and again but kept hearing the engaged tone. Just when she needed the reassurance. Turning the key to the apartment, she saw his face. Dark. Anger? She couldn’t read the expression. He turned away as she went to hug him. What’s wrong she asked him, inwardly thinking, how could his day have been worse than hers.

He put the opened envelope into her hand. She noticed the logo of the laboratory where she had been sent by the company to have her tests done. She went through the report. The words repeated -- normal, normal, within range, within range and then she saw it. It was unmistakable.  Red. Bold font and underlined. “HIV-positive”. And the electronic signature of a doctor she didn’t even know.

The letter came opened, he said. The landlord has evicted us. Effective immediately. There are copies circulated to our families. His words trailed. She felt faint. She tried to reach out for him and now recognised the distinct loathing in his tone. But, she said, we both have had our pasts, and we’ve just only started living together.

He yelled so loudly that her eye drum vibrated. “It’s not me. It’s you. The trails of your past. I should’ve known better.” That wasn’t fair, she said. “I’ve only had one serious relationship and now you. And I’m a regular blood donor, you know that. You should get tested too. Who knows whether you gave this to me.”

She recognised in that instant that the foreign education and liberal upbringing, some of the qualities that she had fallen for, meant nothing. She saw that he had his bags packed already and was out of the door.

She lay there. Jobless. Alone. Hope far removed from her existence. A life-long sentence with no hope of parole.

On December 1,  the world will relive the discovery of the Human Immunodeficiency Virus (HIV) by Drs. Gallo, Luc Montagnier and Jay Levy.  The hot “retrovirus” of its time: a virus, whose genes are encoded into the RNA instead of the DNA.  The discussions will note that HIV-1 is more prevalent worldwide whereas HIV-2 is seen in Africa.

The world will talk of the devastation that the disease linked to the virus, namely the Acquired Immune Deficiency Syndrome (AIDs) had in the early 80s when so little was known about it. The immune system will be discussed in detail including the diminished level of a particular subtype of lymphocyte; the CD4 lymphocyte that normally fights infection which is the cell that the HIV virus attaches to and infects humans.

Scientists and infectious disease experts will speak of recognising the effects of HIV prevention, including novel ways of preventing mother to child transmission in utero. Sexual and non-sexual methods of transmission of the disease will be discussed. As always, the elaborate HIV dialogues will end on an optimistic note of the possibility that one day an HIV vaccine will be discovered which will eradicate HIV infection entirely.

Somewhere among the small print at the very end of these reports words such as counselling, confidentiality, and consent may be mentioned. Small words that mean the world to the person considering having the test performed or someone who has had a positive test result.

It is imperative to understand that prior to testing for the HIV virus, counselling with trained personnel is mandatory as is obtaining written consent from the concerned individual. This includes situations such as a self- test by the individual, pre-surgical, pre blood donation and even pre-employment testing for HIV. If an individual is tested positive for the virus, post-test counselling with options for Antiretroviral Treatment (ART) may be advised.

The HIV viral copy number or load can be estimated within Day 7-14. This is, therefore, both an early detection test as well as a useful tool to monitor progress of treatment or progression of the disease. By Day 16, tests to detect the HIV p24 antigen may be noted. By day 7-21, around 70% of individuals who are HIV positive will become symptomatic. By Day 28, it is estimated that 95% will test positive for the HIV antibodies, which increases to 90.99% by Day 90.

It is therefore important to understand when a particular HIV test should be done, what test should be performed, what the results indicate and whether repeat testing is necessary. It is recommended that if an HIV antibody test is positive that this be confirmed with a second test using a different kit. It may also be clear now that in the event of a suspicion of HIV exposure, the window period is what determines whether a negative HIV result is truly negative, or the test needs to be repeated after the perceived window period.

The misconception persists that HIV and AIDS are interchangeable terms, whereas, in fact, it is only when the CD4 lymphocyte count drops to 200 that a diagnosis of AIDS is made. Misperceptions abound that HIV is transmitted via hugging, handshakes, holding hands, spitting, sharing of food and utensils, sharing swimming pools, coughing or sneezing. It’s a high time such misperceptions and the stigma attached to the disease be removed.

Confidentiality of reporting of HIV must be ensured within hospital or laboratory environments with access being provided only to the immediate attending physician. Access to reports by immediate family members must be approved of by the concerned patient. In the event that HIV positive cases are to be notified to the state or national health departments, it is imperative that unique identifiers such as name, address, telephonic, email communication, PAN or Aadhar card identification be removed.

The burden of receiving an HIV positive report is tremendous to the patient inflicting unimaginable psychological stress, extreme hopelessness, depression, mental health issues and suicidal tendencies. As with pre-employment checking women for pregnancy, HIV testing raises serious discriminatory ethical debates that question the validity of this tool, unless the recruiting agency would definitively invest in ART for the employee.

(Dr. Samuel, MD, is a former Professor of Pathology, Christian Medical College, Vellore)