Dr Arlene Thorbourne, director of pharmacy at the University Hospital of the West Indies (UHWI), has addressed concerns from sickle cell patients about medication shortages. While patients voiced frustrations over the unavailability of pethidine – a pain medication they previously relied on – Dr Thorbourne explained that pethidine has been in short supply globally for two years. She emphasised that alternative medications, like morphine, are available and generally effective, despite some patients' concerns about allergies. Thorbourne assured that the hospital continues to prioritise patient care.

Pain and despair

Sickle cell patients allege discrimination in care, medication shortage; hospital pushes back on claims

Jamaica Gleaner/27 Sep 2024/Andre Williams/staff Reporter

 

SEVERAL SICKLE cell patients are are reportedly struggling to cope with their condition, expressing feelings of despair as they cite experiences of alleged discrimination from medics and a shortage of medication as significant challenges.

Sickle cell disease occurs when most haemoglobin in red blood cells is type S (sickle). Under certain conditions, these cells deform into a sickle shape, leading to quicker breakdown and anemia. The sickle cells can also clump together, blocking blood vessels and causing damage, which affects the entire body.

Common complications include bone pain, acute chest syndrome (similar to pneumonia), and serious infections.

In an interview with The Gleaner during Sickle Cell Awareness Month, which is observed in September, patients – who spoke anonymously for fear of retaliation – highlighted issues negatively impacting their treatment and care. However, senior health professionals have refuted claims of discrimination and have stated that the drug shortage is not unique to Jamaica.

One patient in his 20s, who suffers from severe sickle cell disease, shared his experience.

“I used to go to UHWI (University Hospital of the West Indies) for treatment up until November 2022, when the Accident and Emergency Department decided to put a halt certain types of drugs in the hospital – the pethidine. They said they don’t carry it anymore,” he told The Gleaner.

He explained that since then, when he falls

ill, he is given medications like morphine, to which some patients are allergic.

“For me, I’m in a situation right now. I’m talking to you from the hospital and I’m being forced to take a medication that I am allergic to. I’ve made complaints to several of the doctors and consultants and nothing has changed,” he added, emphasising that this puts his health at further risk.

He also noted that when he visits the Sickle Cell Unit at The University of the West Indies (UWI), patients are often transferred to the adjacent University Hospital.

“Some people may say, ‘Why not go somewhere else?’ They (UHWI and UWI) are the hospital branded as the number one care facility for persons with sickle cell and they are central, so it’s tedious for us to travel elsewhere. KPH is overloaded and when you are there, you have to wait for hours. There is no guarantee of proper treatment,” he said.

The alternative medications to pethidine come with serious side effects, including nausea, constipation, swelling, itching, and mood changes.

“Dem a tell you say you have fi tek this because there is nothing else they can give, so is either you take this or go home and suffer. That was one of the things the doctors told me … This is something that we are born with, which is passed down from our parents,” the patient explained, highlighting the hereditary nature of sickle cell disease.

A second patient echoed similar frustrations.

“I did a surgery last year and I went back for assessment and a senior doctor see me ... As she come out and see me, she said, ‘We nah no medication for you, enuh. You afi go back home or you find a next health facility’.

“That’s how they treat us. If we are there and in serious pain, it’s the same thing. Dem a go tell yuh say dem don’t have any medication,” the patient told The Gleaner, noting that the bad experiences outweigh the good.

“Dem a go make you lay down and cry in pain. Nobody nah look pon yuh,” added the patient, who is in his 30s. “We fear to go to the hospital. We fear for our lives to go there and they don’t assist us and we just dead.”

Another patient expressed that she would never wish the illness on anyone, as it brings great discomfort and the difficulties in accessing treatment only add to the stress.

“From the triage, it is difficult for most patients ... Some of them (doctors) think that all sicklers are addicts, meaning we are addicted to the medication. While that may be the case with some, you can’t put everyone in one box,” the patient lamented.

She added that unlike some patients, she is not allergic to morphine.

“Sickle cell is not a nice thing. If I could trade this, I would, but I know that would be wickedness.

There is no way we should go up there for pain and they are telling us we’re not feeling pain,” she said.

She is recommending that the doctors be more professional and treat all patients equally.

“I’ve heard a doctor say she don’t triage these type of people. Really? We and hypertensive, diabetic, cancer patients are one category. We are all patients. It’s not a pick and choose who you want to look after. I’ve never seen anyone sit and wait for a doctor for six and eight hours like sickle cell patients,” the 20-odd-year-old woman told The Gleaner.

NO DISCRIMINATION

Fitzgerald Mitchell, CEO of UHWI, told The Gleaner that the St Andrew-based hospital does not practice discrimination.

“I can categorically say we don’t discriminate against anybody. We are a hospital and the hospital treats all type of patients. We have various disease types here and we have to treat them, so there is absolutely no discrimination,” Mitchell said.

He acknowledged the worldwide shortage of pethidine, noting it has led to the use of alternative treatments.

“Everything done is in respect to helping the patient,” he said, adding that patients can develop addictions to pethidine.

Dr Arlene Thorbourne, the director of pharmacy at UHWI, said that pethidine is not the preferred drug for sickle cell pain and has been in short supply for at least two years.

“The other facilities don’t carry pethidine either. There are other alternatives that are available that the patients have been receiving, but it is the pethidine, in particular, that is short,” she explained, noting that morphine is the primary alternative.

“That has always been the issue because a lot of them complain about allergies to morphine, but yet when we give them the morphine, they do quite fine. I don’t know if it’s a personal thing,” she said, addressing the patients’ concerns about the replacement drug.

Thorbourne assured that other painkillers are available for those with morphine allergies.

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