The Myeloma, Lymphoma & Leukaemia Foundation of Barbados
When Hyacinth Grimes was diagnosed with multiple myeloma in 1998, there was very little information available in Barbados about this blood cancer.
“The lack of information prompted my haematologist and me to start an organisation for patients with myeloma,” said Hyacinth, co-founder and president of The Myeloma, Lymphoma & Leukaemia Foundation of Barbados.
“We started the organisation in February 2002 for patients with myeloma but then people wanted to know why only myeloma and not all blood cancers,” she said. So, in May 2002, the Foundation decided to focus on all blood cancers and changed its name to the Myeloma, Lymphoma and Leukaemia Foundation of Barbados (MLLF), a registered charity.
Hyacinth is assisted in her work by an Executive Committee of 12 people that includes three physicians/haematologists. In addition, volunteers also help out but not as many as needed for the work that has to be done.
“It’s really a problem getting volunteers. There are people who volunteer for short periods but, because of circumstances that arise, they have to stop. However there are a few committed ones,” she said.
Caring for Patients
The objectives of the Foundation are to:
- Provide a supportive network for sufferers of blood-related cancers and their families;
- Act as an effective lobbying agent on behalf of such persons and to influence government policy on matters pertaining to blood-related cancers;
- Educate the Barbadian public about blood cancers.
The mission of MLLF is, therefore, to provide comprehensive support for persons afflicted with a blood-related cancer in Barbados.
“We’re a long way off from providing comprehensive care but we hope to get there one day,” said Hyacinth.
The organisation provides basic care which includes educating patients, their families and caregivers, counselling patients and family members, financial assistance and any other support they may need.
“The financial assistance we provide helps patients purchase their medications. Sometimes we have to pay the patient’s rent or buy food if the breadwinner is the one undergoing treatment and cannot work,” she said. The MLLF will also assist with the purchasing of children’s clothes, primarily school uniforms.
In addition, the Foundation provides a funeral grant for very needy families.
“If the patient dies and the family is having difficulty paying the funeral bill, we will help with those expenses. However, we don’t get many requests so it’s not a burdensome expenditure for us,” she said.
Fundraising: Annual Tea Party Fundraiser
The money the Foundation gives patients to help with their various expenses comes from fundraising initiatives with the annual tea party being the Foundation’s biggest one. This event is held on the first Saturday in November each year.
“The tea party is very well attended with between 200 and 300 people. The funds raised really help us meet our budget needs,” said Hyacinth. The tea party raises approximately BBD$16,000 (US$8,000).1
The annual tea party is held at the facilities of the National Union of Public Workers (NUPW) from 3 p.m. to 6 p.m.
“From the outset, the NUPW has been supportive of the work we do and has allowed us to use their facilities at no cost to us,” she said.
Entertainment for the event is usually provided by the band of the Barbados Defence Force along with other entertainers and groups.
Other fundraising events include gospel concerts and the sale of ribbons and pins.
“The Foundation receives some corporate donations but not as many as we’d would like to meet the needs of patients. We also receive donations during our outreach activities especially at the supermarkets as people donate to us,” she said.
Financial Challenges Facing Patients
Patients who are wealthy or those with private health insurance have access to all the different treatments that are available on the market. However, those who don’t, face a more challenging time. Although Barbados provides free healthcare to all Barbadians, not all drugs are on the Barbados Drug Formulary.
“If a drug is not on the formulary, the patient has to pay for it. Once a drug is on the formulary, the patient receives it for free,” Hyacinth said.
Other expenses are related to the tests needed to determine a patient’s subtype or having a positron emission tomography scan as these tests have to be done outside of Barbados.
“Some patients do not have the funds to pay for these tests so we’ll pay for things like that,” she said.
Patients requiring a stem cell transplant (SCT) will also need to go to an overseas hospital as SCT is not available in Barbados.
“Sometimes the government will fund an SCT. The Ministry of Health and doctors will assess the case and determine if it is worthwhile for the patient to receive an SCT. The decision will depend on how the patient has responded to previous treatments, the patient’s age and prognosis,” she said.
Hyacinth noted that the government/Ministry of Health is more likely to provide assistance for an SCT if the patient has health insurance as the government then only has to pay for what the insurance company doesn’t cover. An SCT can cost US$250,000 or more.
For those patients the government deems eligible for assistance, Hyacinth’s group will give them some money to help with some of the other expenses they may incur while receiving treatment.
Creating a Level Playing Field
While Barbados delivers free healthcare to its citizens, there are some services that are inadequate. High pricing of drugs by the manufacturers, an ageing population with increasing non-communicable diseases (NCDs) and insufficient funding will affect service delivery.
“Our healthcare system is under pressure and I understand that. However, at the same time, patients have a right to have the best care that is available and that includes all available therapies,” Hyacinth said.
Hyacinth feels that the way healthcare is provided could be greatly improved but there is one thing she would really like to see and that is lower drug pricing.
“The drug prices are much too high. Many countries in the Caribbean and around the world complain about this. It’s not a level playing field for all patients. If you have the money or health insurance, then it is a little bit more level but for those who don’t have it, it isn’t,” she said.
Anyone diagnosed with cancer in Barbados will be treated but if they are diagnosed with a particular subtype of lymphoma, for example, they may not get the newest therapy. This is because of a lack of funds to purchase the drug if it is not on the drug formulary or authorised by a special drug committee.
“We don’t do clinical trials in Barbados, so patients cannot access treatment that way either,” she said.
Barbados hopes to restructure and reform its healthcare system and is looking at universal healthcare which will encompass all Barbadians. Emphasis will be on preventive care as its aim is to deliver comprehensive healthcare to its citizens. At present, under the auspices of the Barbados Drug Service, those under 16 years, the aged and those stricken by communicable and NCDs have access to free medication. There is also a free dental service for school children.
Another challenge confronting patients is late diagnosis. Patients are most likely to be misdiagnosed by their general practitioner (GP) at the early onset of their disease often leading to poor or fatal outcomes.
“When a patient has lymphoma for a year and the doctor thinks it’s something else until the patient becomes very ill, it’s a bit much,” she said.
Hyacinth can relate to the problem of late diagnosis.
“I went through the same process. Although it didn’t take a year before I was diagnosed, nobody seemed to understand what was going on with me,” she said.
It was only when a new haematologist came to Barbados that finally Hyacinth was diagnosed with multiple myeloma after having been really sick for six months.
There are four haematologists in Barbados which Hyacinth feels is enough for the population. The population of Barbados is just over 280,000 people2 of which Hyacinth estimates 2% to 3% of the cancer population have a blood-related cancer.
“I think the issue is more a lack of awareness among front-line doctors/GPs than a lack of haematologists,” she said.
Efforts to Increase Awareness
To increase awareness among members of the public, Hyacinth and some volunteers attend the haematology clinic at the local hospital twice a week.
“At the clinic, we educate patients, family members and healthcare givers, provide counselling and generally listen to what the patient needs are,” Hyacinth said.
The Foundation also does approximately 20 outreach events in a given year.
“We speak at service clubs, churches, parent-teacher associations in schools and health fairs. We also talk to employers and employees in the workplace,” she said.
Supermarkets are another venue for community outreach efforts.
“We ask the management of various supermarkets for permission to set up a table from where we can meet all customers,” she said.
In addition to all these awareness efforts, the Foundation celebrates World Lymphoma Awareness Day and Blood Cancer Month in September, World Cancer Day on February 4 and Myeloma Action Month in March.
“We’re kept very busy. We’re doing what we’re supposed to do and while it would be nice to have more volunteers to help, we make do with what we have,” she said.
In recognition of all her nursing services, especially in palliative care, Hyacinth was a recipient of the Barbados Service Star in the 2015 National Honours and Awards.
“My hope for the near future is that Barbados will have an affordable and sustainable comprehensive health insurance plan to meet the needs of its citizens,” she said.
Thank you, Hyacinth, and your team at The Myeloma, Lymphoma & Leukaemia Foundation for the amazing work you do to help those with a blood cancer in Barbados and for all your efforts to increase awareness in the community.
- The Money converter.com. http://themoneyconverter.com/USD/BBD.aspx. Accessed April 8, 2016.
- https://www.cia.gov/library/publications/the-world-factbook/geos/bb.html. Accessed April 5, 2016.
April 28, 2016