‘HCQ Is My Lifeline’: Arthritis Patients Face Severe Drug Shortage
People with certain autoimmune diseases depend on their daily dose of hydroxychloroquine.
“This drug is like food to me. I take it every morning and night - 200 mg without fail. I just can’t go without it," says Vachasamrita Saiju, founder of Lupus Trust India. She's been battling Lupus since she was 14. And the drug she is talking about is Hydroxychloroquine (HCQ). HCQ has become a buzzword in our battle against COVID-19 - touted as a treatment, as a prophylactic, as a 'miracle drug', none of which is based on solid science.
What HCQ is being used for decades, as a verified treatment, is autoimmune conditions like lupus and rheumatoid arthritis (RA). Besides malaria, of course.
Ever since HCQ emerged as a buzzword in COVID treatment, people with these autoimmune diseases have not been able to find the medicine at their local pharmacies. FIT speaks to patients, doctors as well as chemists from different corners of the country to understand what explains the shortage, and what it means for people who are completely dependent on it.
Why The Drug is So Essential
While hydroxychloroquine has commonly been called an ‘anti-malarial drug’, there is little awareness about the medicine’s indispensability for patients with other chronic illnesses.
Arvind Chopra, Director and Chief Rheumatologist at Centre for Rheumatic Diseases, explains that HCQ has been used extensively to treat RA, lupus and lupus-like disorders all over the world for over five decades. “These are immunologically driven inflammatory disorders that cause painful swelling of joints which are difficult to treat and often become chronic. These diseases can also adversely affect several other body parts such as lungs, heart, eyes, nerves, bones and skin. Lupus and lupus-like disorders are somewhat more serious than RA because they cause relatively less damage to joints but quickly produce life-threatening effects on other organs. These are often fatal and need very intensive and long term care.”
Besides pain killers and anti-inflammatory drugs, special drugs called Disease Modifying Anti-Rheumatic Drugs (DMARD) are used by rheumatologists to help these people.
“HCQ is a pivotal DMARD that is often the first step in the management of RA. Prolonged experience has also taught the medical science that it is much safer than many other potent DMARDs available in the market. There are now several other drug options in RA based on disease characteristics but HCQ is the central option for lupus and lupus like disorders. It would not be erroneous to state that in these disorders, it is lifesaving.”Dr Arvind Chopra
Dr Arvind, along with other doctors FIT approached, agreed to have observed shortages of the drug in pharmacies. Dr Puneet Mashru, Consultant and Additional Director, Rheumatology at Jaslok Hospital said, “I have been receiving 20-30 calls daily from my patients. They are out of their HCQ stock and are unable to buy more. This is extremely worrying as it could flare up the disease and worsen their symptoms.”
“I Have Been Taking HCQ Like Food”
Vachasamrita Saiju was 14 when she was diagnosed with Systemic Lupus Erythematosus (SLE). Speaking with FIT, she shares, “Since the last 2-3 weeks, pharmacies have been reporting shortages of the drug. Fortunately, I had a stock for two months. But for many patients who don’t, this shortage can be extremely worrying.”
Based out of Kerala, Saiju co-founded Lupus Trust India, an organisation to support lupus patients in the country. From her network of patients, she knows that people from around the country are facing a shortage of the drug. “There is severe panic among people right now. I have been receiving frantic calls from all around the country from people who haven’t been able to find HCQ in their nearby chemist shops. Our Trust deals with patients with lung, heart, kidney and liver involvements. HCQ is by far the most critical drug for all of us. Not receiving it on time can be fatal.”
“The situation is worrying right now. In Kerala alone, there are almost 40,000 lupus patients. Many of them have gotten better after a long journey of suffering from serious complications, and now, after all this, they are at risk of getting back to square one. What will they do if they don’t get the drug? There is no alternative as safe and effective.”Vachasamrita Saiju
Shivani Bharve, a trustee of Mission Arthritis India shares that she is in touch with over 100 arthritis patients on WhatsApp, and they are all worried of what will happen to them in the coming few days. “A girl who had run out of her supply called me up. She had developed severe swelling because of the sudden withdrawal of the medicine and didn't know what to do. The situation is extremely bad.”
She put me in touch with Nikita Raka in Pune, who had only started taking HCQ two months back.
“I was prescribed the medicine till 15 April, but I only bought enough to cover till 1st, thinking I will buy the next stock later. But the moment the news about its use for COVID-19 patients and workers started doing the rounds, my parents called and told me to immediately buy the medicine for myself. By the time I checked, all chemists around me had run out of it.”Nikita Raka
Another person residing in Noida had a similar story to share. “I have been trying to find HCQS 200 in my neighbourhood for my wife who has arthritis. I checked over five chemists, including Apollo. It’s not available online as well. On 21 March, a day before the curfew, a chemist told me he had 70 strips of HCQ, and within hours, it was out of stock. Our doctor had no option but to prescribe SAZO medicine instead, but that's not at all close to the relief HCQS gives. I've placed an order online since March 23 and that's not yet delivered.”
What Explains the Shortage?
The problem started emerging after initial claims about the medicine’s efficiency for COVID-19 began to flood medical and political circles, with US President Donald Trump actively advocating the use of the drug. While the evidence for this is limited, contentious and questionable (as FIT had earlier reported), the demand for the drug, of which India is the leading exporter, continues to rise through the roof.
India’s ICMR has also recommended the use of hydroxychloroquine as a prophylactic for high-risk populations such as those in close contact with confirmed cases. When the country lifted export restrictions on the drug on 7 April, the health ministry assured that India had ‘enough’ to meet its local demand.
The reality on the ground, for arthritis and lupus patients, has been completely different ever since.
Supply obstructions, hoarding, and diversion to COVID-19 management are some reasons that came forward when we discussed the issue of shortage and unavailability of the drug with chemists and doctors.
Most pharmacies we approached in Delhi, Noida and Mumbai, said that they have not been receiving the stock from their distributors. Dr Pravin Patil, a rheumatologist in Pune, said,
“Chemists are telling me that their distributors are refusing to issue the stock and are only providing it to patients and hospitals dealing with COVID-19. Pharma companies are telling us that they have enough, but governments are diverting them towards the management of the current pandemic.”Dr Pravin Patil
Nikita shares that the chemists in her neighbourhood had the supplies, but they had been ordered to only give them to COVID-19 hospitals. “I have been informed about a medical camp that has a stock of HCQ. But that’s 15 km away from where I live. With the lockdown in place, travelling is a major issue. I live alone, I don’t have a car. How do I go and get it? Even government pharmacies are far from my place, and visiting hospitals is risky for already immunocompromised people like us.”
Another possible explanation for the disappearance of the drugs from pharmacies is hoarding and panic-buying by the general population, hoping to self-medicate to stay protected from the virus. “We have reason to believe that this is what started the shortage in the first place,” Dr Patil said.
It was in order to address this misuse that the ministry of health categorised HCQ as a Schedule H1 Drug, meaning that it can only be sold on a prescription by a qualified medical professional.
According to reports, the supply shortage of the drug has even led doctors in many parts of the country to take tough calls on whom to give the medicine. Some hospitals in Chennai, which still have HCQ in their pharmacies, are being forced to only give it to patients with severe pain and swellings in their joints.
Dr Sham Santhanam, a city-based rheumatologist told The Huffington Post,
“We are facing acute shortage of HCQ from the last few weeks and are left with no option but to prioritize our patients according to their health condition.”
On the other hand, pharma companies have, time and again, claimed that they will be ramping up their production even further, and will ensure that both domestic, as well as international demand, is met. “The government has placed an order of 10 crore tablets, which we can service this month,” A K Jain, Joint MD of IPCA Labs, which has nearly 70% market share of this drug in the world, told The Economic Times.
Take Us Into Consideration: A Common Plea
Shivani from Mission Arthritis is particularly worried about the poor. She tells me that people from nearby villages usually travel all the way to the city to get a supply of HCQ. Now, even if they manage to travel through the lockdown, they may not be able to get what they came for, and they will not even know what to do in such circumstances. “I still know that if my condition flares up, I can pop this painkiller and this steroid for temporary relief. Where will these people go? They know of nothing but HCQ - and that’s how it should be because it’s the safest medicine. But now, with its unavailability, thousands of such vulnerable people are at risk.”
Nikita is similarly scared for her 80-year-old neighbour who has run out of her supplies. “I can handle myself. I will do something, somehow. But what about that old woman? How will she get the supplies if not from her regular nearby pharmacy?”
These stories are pouring in from everywhere. The only hope for millions living with these conditions is for the government to intervene and ensure an uninterrupted supply of the drug for people with prescriptions.
Dr Arvind Chopra urges for the medical community and the concerned authorities to take the matter up for the sake of the patients.
“Our patients are suffering. The government is correct in working towards the newly encountered virus that is killing people. But that cannot happen at the expense of those who are already chronically ill and are battling other issues. Why should they suffer?”Dr Arvind Chopra
“Patients have the right to ask if the government has enough for them. We have reason to believe that the situation is getting better. But all we want is for these patients to be considered, for their numbers to be included in any calculations of HCQ requirement and projection for the country. That’s all we need,” he says.
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