“I woke up one morning unable to speak and walk normally.” “I woke up and I was blind in one eye.” “I started bumping into things that weren’t there.” “I still remember going to scratch my leg and I just couldn’t feel anything.” These are some of the testimonials of patients with multiple sclerosis (EM), a disease with a “thousand faces” that takes its toll on the health and economy of hundreds of low-income families.
Worldwide, around 2.8 million people live with multiple sclerosis, a chronic neurological condition of an inflammatory and autoimmune nature, pathologically characterized by multifocal areas of development of lesions and damage in the central nervous system. This is one of the main causes of neurological disability of non-traumatic origin in adults and young people, mainly in women in their maximum period of productivity. The most common form of multiple sclerosis is relapsing-remitting (RRMS), which affects 85% of patients.
In Dominican Republic, the statistics for multiple sclerosis are not alarming, but their rise is worrying. To date, the prevalence of this disease is 3.2 per 100,000 inhabitants, with a total of approximately 290 diagnosed cases. The amount seems minimal, but it does take into account that in 2017 there were 1.6 per 100,000 inhabitants and some 166 patients, it is evident that during the last five years the prevalence and incidence have increased substantially.
The neurologists Biany Santos Pujols and Deyanira Ramírez indicated to the moneyseparately, that the general situation in the Dominican Republic does not represent a direct threat, because the prevalence is low; however, the increase in MS cases each year draws his attention.
“This increase in the number of patients is global for most countries, but we think it is involved in the exposure to viruses that we have had in recent years, such as covid-19 and influenza,” Santos Pujols said.
Treatment and health coverage
The treatments used for multiple sclerosis are classified as high-cost drugs. In the Dominican Republic there is a Department of High Cost Drug Programs, managed by the State, through the Ministry of Public Health. However, the increase in the number of cases has caused difficulties in providing rapid responses to new patients.
“Currently, we have approximately nine drugs available in the high-cost drug program, out of more than 20 that exist internationally that are approved by the EMA and the FDA to treat multiple sclerosis,” said Ramírez, citing that only one of they could cost an average of RD$100,000 per month.
Both specialists agreed that given the exponential increase in cases, health risk managers (ARS) must cover multiple sclerosis and other neurological diseases, because the drugs are very expensive and are not sustainable in the long term. Therefore, they say, it would affect the economy of low-income families who cannot buy them.
According to Ramírez, an internist-neurologist, a multiple sclerosis patient must go to the clinic every three months, and if he presents a new symptom he must go immediately to receive specific treatment. The average cost of a consultation to a neurologist It goes from RD$3,000 to RD$4,000, which could vary depending on the specialist and medical center.
The main challenge for patients with multiple sclerosis in the Dominican Republic is the cost of tests and medications, which are expensive. In addition, patients must meet requirements to access high cost treatmentswhich can include long wait times.
Santos adds that other typical symptoms in these patients with one or more different episodes are decreased or loss of visual acuity, muscle weakness, dizziness, unsteadiness, double vision, paralysis of eye movements or impaired ability to urinate or evacuate.
Both Ramírez and Santos stressed that there is no cure for multiple sclerosis, but that there is high efficacy with new therapies that allow the patient to maintain a normal life for many years. There are different stages or phenotypes of the disease as the clinical isolated syndrome, relapsing-remitting, secondarily progressive, and primarily progressive multiple sclerosis.