Why HIV Patients Are Having To Protest Shortage Of Life Saving Drugs

Last month, 20-year-old Sunil* from Badarpur area of Delhi was unwell. Doctors at the nearby health centre ran some tests where Sunil tested positive for HIV/AIDS. The news shook him and he became uncertain about his future. The doctors counselled him and advised medicines.  

But now, a month later, Sunil is joined by several other HIV patients at the National AIDS Control Organisation (NACO) office in Delhi, protesting the shortage of Anti Retroviral Therapy (ART). The shortage of the drug, vital for the treatment,  has put at risk lives of many HIV patients in the country.

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Holding placards in the premises of NACO office,  over 30 HIV patients of all age groups, accused the government for delay in procurement of the medicines.

"I was already distressed after the news, and now within a month, there is a shortage of drugs at the centres. I cannot go from one hospital to another for medicines. I even hesitate while asking for medicines from other centres," Sunil said while talking to BOOM.

Sunil, the only child of his parents,  hasn't told them about his condition.  "They are not educated. I don't know if they will understand the disease. I don't want to hurt them," he said.

He contracted the infection after having unprotected sex.  Though he initially wanted to keep his diagnosis a secret, he realised that he had had sexual intercourse with other women also and they should be informed about it. So he decided to at least tell them about it.

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"It was hard. My friends even refused to believe that I had AIDS. Some of them are angry with me now and I have even limited my communication with my friends because I no longer feel comfortable with them," he added.

What are the demands?

Like Sunil,  there are people from various states at the sit-in protests in Delhi.  They told BOOM that the shortage of medicines has affected thousands of people for over six months. According to Jina Ngangom, a volunteer  with an NGO named The Delhi Network of Positive People, the centre has not procured stocks and has forced states to make their own purchases.

Ngangom said that among crucial drugs that it failed to procure was Dolutegravir (DTG) 50 mg, a relatively new medicine that reduces viral load rapidly. Other such drugs are lopinavir and ritonavir, which are used for first and second-line treatment and are not available in centres.

She explains that DTG has been recommended by The World Health Organisation as a first-line drug to treat HIV. The medicine is more effective, has fewer side effects and has a high genetic barrier to developing drug resistance.

Denzil Basil, a volunteer with the NGO, said that they wrote several letters to the government demanding the availability of medicines but there were no steps taken by the government.

"For months we were getting medicines only for 4-5 days or sometimes for a week, which forced us to protest. Most of the people who are on this treatment are very poor. They can't travel after 4-5 days for these medicines and leave their daily wages – that's difficult for them," he said.

"The shortage is only adding to our troubles because this virus doesn't care about tenders or other excuses. It multiplies the health issues for a patient and many people might have even die without getting these drugs," Basil told BOOM. He said the shortage was seen after the outbreak of Covid-19, leaving HIV-infected patients fighting for their lives.

Sitting next to him was 42-year-old Reetu*,  the sole breadwinner for her family of three. She said that non-availability of medicines at the centres causes health complications for her. 

"my daughter is getting married. If my health condition doesn't t improve, I don't think I can see her getting married. I don't want to die before that," she said.  "Why is the government playing with our lives?".

"We request the government to provide us with our rights and end our sufferings," she said.

What does NACO say about it?

The NACO is a central government agency that provides medicines, diagnostic kits and training to treat patients infected with HIV. The virus, if untreated, causes Acquired Immune Deficiency Syndrome, or AIDS.

Despite the patients demanding the availability of drugs, a senior officer, on conditions of anonymity, told BOOM that there is no shortage of drugs at  ART centres. However, he said the people were protesting because now they're being given medicines for a few weeks, unlike earlier when they were given medicines for a couple of months. 

I tried to talk to these protestors and tried to ask them about their demands but they are not ready to listen. I don't even know what are their demands and what they want us to do," he said.

The NACO in December 2021 had asked all states to procure certain drugs after there was an issue in finalising the purchase orders with the bidders. Among crucial drugs that it failed to procure were DTG 50 mg and second-line drugs.

The officer explained that there are multiple gates to cross to finalize purchases from companies and sometimes it gets delayed. "We have also taken up this issue with the Ministry of health and they are working on it," he said.

Expensive medicines

However, patients said that the cost of medicines in retail stores is around Rs 3500- 4000 and they can't afford it. "Due to weak immunity, HIV-affected patients prefer to work with organisations where they have low workloads. We already find hardships in managing daily expenses from our salaries. How can we afford to buy medicines from private medical stores? But if we cannot take medicines – there are high chances of losing a life," said Basil.

Continued trauma

HIV infection in India was first detected in 1986 among female sex workers in Chennai. The total number of people living with HIV in India was estimated at 23.19 lakh (18.33 lakh– 29.78 lakh) in 2020. India is home to the third largest population of people living with HIV and AIDS.

Speaking to BOOM, Anjali Gopalan, founder and executive director of Naz Foundation, an NGO dedicated to the fight against the HIV/AIDS epidemic said that HIV-affected people have to protest to get essential medicines without which it can be life-threatening"

Gopalan ran a campaign against the epidemic which was a major success in the country but since the Covid cases have been on a rise, the focus shifted.

"It's ridiculous that every time after 3-4 days these patients have to take off from their daily work to get these drugs. It affects every aspect of their life. The government has made a commitment and they must feed through because it's a question of life and death for people," she told BOOM.

There is a stigma associated with the HIV disease in India due to which HIV-affected people usually hesitate in availing of health services. She explains that the lack of a proactive approach from the government has aggravated the situation.

"HIV has huge moral connotations. Somehow, people who have end-up getting infected get blamed for getting infected – saying that they don't deserve any better….that's the mindset. This disease has to be controlled and can be controlled but it won't happen if the government is not serious having prevention about programmes in place. The prevention and medical aspect are not getting taken care of right now," she expressed.

She added that this happens regularly once in a while. "If they can do at X-period of time why can't they make it the rest of the time? How are patients going to manage without drugs?" Gopalan questioned authorities.