Drugs woes for multiple sclerosis patients

On the heels of patients complaining of unbearable delays in appointments and service at the Mt Hope Hospital comes a complaint of lack of drugs to treat Multiple Sclerosis (MS) patients. MS patients are facing horrors trying to source medication to treat their ailment, says Dr Daphne Phillips, president of the Multiple Sclerosis Support Foundation (MSSF) of Trinidad and Tobago. MS is a progressive, immune-mediated disorder that means the system designed to keep one’s body healthy mistakenly attacks parts of the body that are vital to everyday function. The protective coverings of nerve cells are damaged, which leads to diminished function in the brain and spinal cord. MS patients suffer from fatigue and numbness, while severe cases of MS can cause paralysis, vision loss, and diminished brain function. In an e-mail to the Express yesterday, Phillips, who was diagnosed with MS in 2000, stated that Beta Interferon (or Betaferon) is the initial disease-modifying drug which was approved more than 25 years ago for MS by the Ministry of Health. “It is provided through the distribution company Smith Robertson. This drug, however, which is heavily relied upon by MS patients, is regularly unavailable to persons suffering with MS in Trinidad and Tobago,” she stated. Phillips, a former minister of culture and gender affairs under the United National Congress (UNC) from 1995-2000, criticised the authorities and accused them of negligence in providing this drug to the public health clinics for the treatment of persons suffering from MS. “Members of the MSSF have reported having to trek from the Port of Spain clinic to Mt Hope to Sangre Grande or San Fernando clinics, and betwixt and between, to find this elusive drug, which has been recommended by their neurologist. “When they may be lucky to obtain a supply, they are given limited amounts in order to save some for others,” she lamented. Phillips scolded the Health Ministry, stating that the foundation “protests” the inferior treatment of MS by the Health Ministry compared to other illnesses. She demanded that the ministry address this problem immediately. Phillips noted that with the devastating effects of the Covid-19 pandemic on the provision of services for MS patients as demonstrated by herself (sociologist) and neurologist Dr Nicholas Maraj in recent papers, MS patients continue to suffer from lack of supply of drugs. Unaffordable for many patients Phillips stated research showed 80 per cent of patients experienced postponement of their appointments, thus denying them access to needed drugs. She added that 60 per cent of those whose appointments were allowed could not access recommended drugs, and a few persons complained of having to travel from one clinic to another to access drugs. Phillips stated the impact of these situations included patients experiencing increased difficulty in their performance at the workplace. She said it also resulted in lack of critical care provision in cases of relapse; and lack of treatment for intense symptoms such as pain in face and psychological distress and increased motor dysfunction. Speaking to the Express by phone last night, Phillips said the drug can be purchased privately but it is very expensive. She said at one time she used Betaferon and it cost her $30,000 for one month, a cost many MS patients in this country cannot afford. She said this is not something new as the Health Ministry has been providing the medication for 25 years. “It’s not a new drug. I don’t know if there’s a problem with forex but a lot of people do not have access to the drug,” she said. She said not taking the drug will result in increased disability and severe pain for patients. Chief Medical Officer (CMO) Dr Roshan Parasram, chair of the drug advisory committee, said last night he has asked for feedback from the principal pharmacist on the issue.