BC Patient Calls for Equal Access to Life-Changing Treatment as Province Lags Behind Rest of Canada
Joey was diagnosed with Myelodysplastic Syndromes (MDS) in 2019. Since then, she has undergone more than 85 blood transfusions - procedures that take an entire day and leave her exhausted for nearly half the month. "My life has changed drastically," says Joey. "I used to hike, bike, and swim regularly. Now I'm breathless, fatigued, and often too weak to leave the house."
For patients like Joey, Luspatercept offers new hope. The medication significantly reduces the need for blood transfusions in MDS patients and is publicly covered in every other Canadian province. Despite its proven benefits, BC remains the only jurisdiction that has not approved public coverage. "It breaks my heart," says Joey. "I know of a woman in another province that went an entire year without a transfusion because of this medication."
Beyond the personal toll, repeated transfusions place a significant strain on the healthcare system, requiring hospital resources, blood products, and specialized staff. "This isn't just about one person—it's about improving system efficiency and equity," says Joey. "I'm not asking for special treatment. I'm asking to be treated the same as other Canadians."
MedAccessBC Urges Government to Take Action
Joey's story highlights a larger, systemic issue that the Medicines Access Coalition – BC (MedAccessBC) has been working to address for over two decades. MedAccessBC represents over 30 patient care organizations and advocates for fair, timely, and equitable access to medications for British Columbians.
"We are deeply concerned that patients in BC continue to face barriers to accessing treatments that are standard care in the rest of Canada," says Don Bindon, Co-Chair and Treasurer of MedAccessBC. "BC residents deserve the same level of care and access as all other Canadians. Luspatercept is a clear example where a delay in public coverage is causing unnecessary suffering."
As a non-profit coalition, MedAccessBC continues to collaborate with patient communities, healthcare professionals, and policymakers to ensure that health decisions prioritize outcomes and do not compromise patient well-being in the name of cost containment.
Call to Action
MedAccessBC is urging the provincial government to approve and fund Luspatercept through the BC PharmaCare program without further delay.
Joey Kerr's message to decision-makers is simple: "Help me live the rest of my life with dignity, energy, and independence. Let me have the chance to walk, swim, and maybe even ride my bike again."
About Myelodysplastic Syndromes (MDS)
Myelodysplastic syndromes (MDSs) are a group of diseases where bone marrow does not make enough healthy blood cells. Instead, the bone marrow makes immature blood cells, called blast cells (blasts), that do not work properly. They build up in the bone marrow and the blood and crowd out healthy blood cells. As a result, there are fewer healthy red blood cells, white blood cells, and platelets.
In the past, an MDS was classified as a disease that was not likely to develop into cancer, and it was called pre-leukemia. Now that more is known about MDSs, they are considered cancer. Sometimes, they are called bone marrow failure diseases. An MDS will develop into acute myeloid leukemia (AML) about 30% of the time. (Canadian Cancer Society)
About the Medicines Access Coalition of BC
MedAccess BC advocates for improved access to medications and health technologies for individuals with chronic diseases. Representing over 30 patient organizations, it has been working since 1997 to improve access to evidence-based medicines through BC's PharmaCare program.
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
CBC
an hour ago
- CBC
Physicians getting a 'constant deluge of requests to pick up shifts,' says ER doctor
Dr. Fraser MacKay, an ER doctor and a member of the Canadian Association of Emergency Physicians, says staff shortages affect doctors' decisions on how much and how long to work. He tells BC Today host Michelle Eliot he gets requests every day to pick up shifts across the country, but physicians cannot be in multiple places at once.
Global News
3 hours ago
- Global News
N.S. feeling heat from low-income renters seeking cooler apartments this summer
Sandra Walsh was struggling to breathe in her apartment when temperatures across Nova Scotia soared in July, but the woman on social assistance says her pleas for a government-funded air conditioner have been ignored. 'With the high humidity, it effects my breathing and I have to gasp for air,' says the 46-year-old woman, recently diagnosed with a progressive lung disease. 'Even taking frequent, cold showers isn't really helping.' The resident of New Glasgow, N.S., is among many low-income Canadians with health conditions struggling to get government help to stay cool. She wants to buy a $300 air conditioner, but that would leave her with little money for food or medications. As of Wednesday, Walsh said it had been more than two months since she asked her income assistance caseworker for money to pay for an air conditioner. She said she has made the same request every summer since 2020, but has been refused. Story continues below advertisement Similar struggles over what advocates call the 'right to cooling' are gaining attention across the country. Renters' groups argue AC units are sometimes required to prevent illness and death, and some experts are calling for wider solutions that could include public cooling centres. Last year, another resident of New Glasgow, Julie Leggett, won an appeal before an adjudicator who decided the province had to pay for air conditioner due to her chronic pain condition. But the ruling only applies to Leggett. Nova Scotia's Department of Social Development said in a recent statement its policy of refusing to cover the cost of air conditioners for low-income people with health conditions has not changed. Get daily National news Get the day's top news, political, economic, and current affairs headlines, delivered to your inbox once a day. Sign up for daily National newsletter Sign Up By providing your email address, you have read and agree to Global News' Terms and Conditions and Privacy Policy 'In situations where health risks are worsened by extreme heat, caseworkers may refer individuals to local charities such as St. Vincent de Paul or churches,' a spokeswoman for the department said in an email. Meanwhile, the province says Efficiency Nova Scotia — a non-profit energy conservation utility — can help landlords purchase heat pumps for affordable housing. Leggett says these solutions aren't always available to people living in poverty. 'The province should not be trying to push its legal obligations onto non-profits that are already maxed out,' she wrote in an email. In Ottawa, where temperatures soared in mid-July, 75-year-old apartment dweller Marie Lourdes Garnier said provincial governments should be helping low-income renters purchase air conditioners. Story continues below advertisement She said her apartment was stifling during a recent heat wave, adding that in recent weeks she's found herself growing faint despite continually splashing cold water on her head. A spokesperson for the Ontario government said people on income assistance can apply for an air conditioner when municipal or First Nations programs permit it. In addition, people with disabilities can apply through the Ontario Disabilities Support Program. And the City of Toronto recently started offering a pilot program for low-income seniors. Garnier, who lives on a small pension, isn't eligible for these programs because she is not receiving income assistance. 'It's very, very expensive for me … (and) I'm not talking about (needing an AC unit) for comfort. It's a matter of life and death.' Last year, an advocacy group for low-income renters known as ACORN found that a 'negligible proportion' of its membership received public funds to buy an air conditioner or heat pump. A majority of the 737 people who responded to a survey reported poor sleep, fatigue and headaches from excessive indoor heat. In Moncton, N.B., Peter Jongeneelen — vice chair of ACORN New Brunswick — said that during a recent heat wave, he was admitted to an ER because he was suffering from heat exhaustion. He said people living on disability pensions need help, '(but) there's no real programs out there in New Brunswick. It's something we would like to change.' Story continues below advertisement Meanwhile, the number of people showing up at emergency rooms with heat-related problems continues to rise. Last month, Health Canada reported this type of case rose from about 600 in 2004 to about 1,100 in 2023. In British Columbia, where a 'heat dome' in the summer of 2021 caused 600 deaths, the province committed $30 million in 2023 for a free air conditioner program run by BC Hydro. Since then, about 27,500 free AC units have been installed, the utility said. Still, University of British Columbia researcher Liv Yoon says the program has faced challenges. Some landlords, for example, have said their buildings simply can't support air conditioning. Yoon, co-author of a report titled 'A Right to Cool,' said there's a need for public cooling centres and access to free public transit to reach them. The report also calls for creation of affordable housing that includes passive shade systems to reduce indoor heat. Alex Boston, a B.C.-based urban planner and consultant, said air conditioners may be necessary for some low-income renters, but other solutions are often available. Indoor temperatures can be lowered by using window shades and fans, he said in an interview. Simple shading and air movement can decrease indoor temperatures by as much as 10 C, he said. In New Glasgow, Walsh said shades and fans might help. Story continues below advertisement 'But a refusal (of assistance) would mean I would suffer and not be able to breath with the extreme heat, which can lead to death,' she said.
Cision Canada
3 hours ago
- Cision Canada
Government of Canada launches call for proposals for community projects to help seniors Français
VICTORIA, BC, Aug. 6, 2025 /CNW/ - Communities are stronger when every Canadian feels connected, supported and included. The New Horizons for Seniors Program (NHSP) creates opportunities for thousands of seniors to take the active role in their communities that they deserve. Today, the Honourable Stephanie McLean, Secretary of State (Seniors), launched the 2025–2026 call for proposals for community-based projects through the NHSP. Organizations are invited to apply for funding to support projects that will help seniors be connected and active members of their communities. These projects should reflect the four national priorities for this cycle: supporting healthy aging; preventing senior abuse; celebrating diversity and promoting inclusion; and supporting financial security. The Secretary of State made the announcement while visiting the Power To Be head office in Victoria. The organization received funding through the 2024–25 NHSP community-based stream that invested $60.3 million for 2,905 projects supporting seniors in more than 400 communities across Canada. Their new project, Pathways for Seniors, will allow volunteers to create events where seniors can mentor youth and others in their community, and share their knowledge. The NHSP funds a wide variety of projects, such as computer classes, financial literacy and fraud prevention education, meal deliveries, and intergenerational activities. The 2025–26 call for proposals is open until September 17, 2025. Quotes "I am thrilled that, for the past 21 years, the New Horizons for Seniors Program has funded 43,000 projects in hundreds of communities across Canada. This program continues to improve the quality of life of seniors in every part of the country." – The Honourable Stephanie McLean, Secretary of State (Seniors) "Power To Be has been providing access to nature and nature-based recreation for over 26 years. As a recipient of the New Horizon's for Seniors Program, we have convened a volunteer leadership team made up of six seniors who bring a rich diversity of experience, skillsets and connection to Power To Be. Based on their guidance, we are expanding our programmatic and volunteer offerings to meet the needs of more seniors in our community. Power To Be provides access to nature for people of all ages and abilities, and this new program is rooted in our values of accessibility, inclusion and connection to nature." – Dana Hutchings, Co-CEO, Power To Be Quick facts Seniors are one of Canada's fastest-growing population groups. They will represent almost 25% of the population by 2057 and could reach 11 million people within 15 years. The New Horizons for Seniors Program's community-based stream invests in projects that have a meaningful impact on communities and help to improve seniors' quality of life. Organizations are eligible to receive up to $25,000 in grant funding for projects of up to 52 weeks. Program funding supports projects that address one or more of the program's five objectives: promoting volunteerism among seniors and other generations; engaging seniors through the mentoring of others; expanding awareness of elder abuse, including financial abuse; supporting social participation and the inclusion of seniors; and providing capital assistance for new and existing community projects and programs for seniors. Project proposals must involve seniors in vital roles to lead, plan or deliver the project. Since its inception in 2004, the program has funded over 43,000 projects in hundreds of communities across Canada, with the Government of Canada investing more than $970 million. Based on the last two years of available data, more than 900,000 seniors benefit from NHSP community-based projects each year. Organizations can submit their applications electronically on the Grants and Contributions Online Services portal. Creating an account is a one-time process that allows organizations to apply for various Employment and Social Development Canada funding opportunities in a secure web environment. Organizations serving seniors can access support to prepare their application by contacting their nearest NHSP office. For details on how to apply, visit the New Horizons for Seniors Program webpage. New Horizons for Seniors Program – Community-based project funding Programs and services for seniors Follow us on X (Twitter) Follow us on Facebook SOURCE Employment and Social Development Canada
