At the age of just 57, Madonna has to rely on a cane for walking. Having suffered from multiple sclerosis for more than 20 years, this retired teacher saw her condition deteriorate after going almost two years without taking medication, at the height of the economic crisis that has been raging in Lebanon since 2019.
“I had a relapse after which I was hospitalized, and my mobility has been reduced ever since,” she said.
There are some 3,000 patients in Lebanon — according to corroborating sources, although there are no precise stats — suffering from this neurological disease, which is generally diagnosed at a young age and requires continuous treatment to remain stable.
“For a long time, no one could have guessed that I was suffering from a health condition, because I had access to the right medication,” added Madonna.
But with the collapse of the National Social Security Fund (NSSF) and streamlining the subsidy scheme financed by the central bank in 2021, acquiring the right medication has become an obstacle course.
“The [Public Health] Ministry now subsidizes only two medicines, which is far from enough for people with multiple sclerosis, since treatments vary enormously from case to case and according to the stage of the disease,” said the Pharmacists Syndicate Head Joe Salloum.
Nadine Hilal, senior adviser to caretaker Health Minister Firas Abiad, said that three medicines, not two, are on the subsidy list, denying that this is insufficient.
“These three medications were chosen by a committee of neurologists who believe that they cover the largest number of cases possible, that they are viable alternatives to many other drugs prescribed by doctors and that they are in line with the budget that the ministry can release,” she said.
She pointed out that almost 1,500 patients have registered with the ministry to take advantage of subsidies that enable them to obtain the medicines at preferential prices, much lower than the market price.
However, according to specialists, the medicines still on the list are far from covering all cases, and especially all stages of this neuroinflammatory disease of the brain and spinal cord.
Salloum listed around 15 medications specifically for this disease. “Each case requires a different treatment,” said Dr. Salam Koussa, a neurologist. “The disease causes attacks which, if left untreated, lead to brain cells loss each time, which results in disability,” he added.
“Multiple sclerosis needs to be made stable, but in doing so, the patient’s situation needs to be taken into account,” said the neurologist. For example, a young woman who wants to have children cannot be prescribed the same treatment as a patient with other constraints, hence the diversity of molecules.
Dr. Koussa has little faith in the Health Ministry’s protocols, which have been approved by a committee of experts and cover the majority of cases. “It’s as if we were being asked, in 2024, to practice the medicine that prevailed in the 1990s. Even medicines that are only about 15 years old have been withdrawn from the subsidy lists,” he said.
The number of medicines on the subsidy list is not the only problem facing patients: These products are often sufficiently available to cover the patients registered with the ministry. Madonna, one of those registered, said that she has been able to get only one subsidized injection so far.
Hilal said that “everything is linked to the funding” available to the ministry, and that there are sometimes delays, but added that the supply will not stop.
Between 2019 and 2022, the Public Health Ministry’s budget was divided by almost six, dropping from the equivalent of $495.2 million (at the rate of LL1,500) to around $84.3 million dollars (at a rate of LL89,000).
However, the 2024 budget, which Parliament passed on Friday, has increased this amount: The ministry’s budget is now equivalent to 13.71 percent of the national total.
A source told L’Orient-Le Jour that the Finance and Budget Committee has earmarked LL10,000 billion ($110 million at the current market rate) for this ministry to finance the import of medicines for cancer and chronic diseases, which will be sold at a subsidized rate.
According to some experts, the subsidies have had a perverse effect on medication shortages, due to the illegal stockpiling and smuggling of pharmaceutical products on the black market in Lebanon and Syria. In the meantime, patients are subject to an agonizing wait.
“Patients are often forced to raise the cost of their treatment themselves when they cannot get it at the subsidized price. The cheapest treatment costs around $360 a month on the market. Some boxes cost as much as $600 dollars each. Some injections alone cost almost $1,500,” said Jane Koussa, President of Alisep, a Lebanese NGO for Multiple Sclerosis. According to her, more patients have reduced or even discontinued their doses.
According to Salloum, stock-outs of specialized medications are not limited to subsidized products, as drug importers no longer have the necessary liquidity or credit facilities. High prices and shortages often force patients, like Madonna, to buy from abroad, like Turkey or elsewhere.
“Before the crisis, Alisep focused on the provision of psychological support for patients, which was essential in their case, and sometimes covered the additional costs not covered by the social security system,” said Koussa.
She added that in order to provide financial support to the hundreds of patients affiliated to her association, who find themselves destitute as a result of the social security system’s collapse, she would need to foresee a budget of at least $750,000. “This is no longer the role of civil society, but rather the state,” she said.
Madonna lives in fear of not being able to afford the cost of her next injection, due in a month, if she doesn’t manage to get it at a subsidized price. “This disease doesn’t kill you, but it can turn you into a dependent being,” she said. That’s why, from now on, it’s her loved ones she’s worried about, because they’ll have to support her if she gets worse.
This article was originally published in L'Orient-Le Jour. Translated by Joelle El Khoury.