Every day, people coping with cystic fibrosis (CF) strive to live their lives to the fullest, from exercising and managing their everyday care to tackling obstacles head-on and raising awareness. Throughout the years, CF communities have been making their mark and pushing for better care. Today, these communities are banding together to tackle the politics that are putting money before wellness.
On June 13th 2012, 12-year-old Madi Vanstone received a phone call from the Ontario Ministry of Health. Officials informed Madi and her family that she would be funded by Ontario’s provincial health plan to receive a new life-saving CF medication by the name of Kalydeco, which would allow her to live a normal life. “My daughter’s going to be healthy. We’re not going to be fighting a fight and we’re going to be able to have a nice, low-key family life and we haven’t had that for 12 years,” said Madi’s mother, Beth.
Kalydeco costs over $348,000 a year and without it, Madi would need to undergo a lung transplant. During her elementary years, Madi received help from over 150 classmates, who each wrote letters demanding the coverage of Kalydeco and she even participated in protests for several months. “Getting my voice heard—that was definitely one challenge, [The other challenge] was just getting people to notice that the medication needed to be covered—people were dying. People never took it seriously until I had to say, ‘This is a serious problem that needs to be fixed’. I felt like I had a big responsibility and people were counting on me. I was scared that all of my efforts would go down the drain if it wasn’t going to be covered. But I didn’t stop pushing. I just said to myself, ‘This needs to be done’. I guess I could be called stubborn but I just kept pushing,” said Madi.
On a fourth of July celebration in 2017, Dianne Morrison spotted United States senator, Susan Collins, in the crowd. Dianne asked her if she had a few minutes to spare to talk about healthcare. She then proceeded to tell Senator Collins about her 12-year-old grandson, Zachary, who is living with CF. On July 29th, Senator Collins cast a vote against the repeal of the Affordable Care Act (ACA), stating that Dianne’s conversation had a major impact on her. “I think America is really fed up, obviously. People just want things done right. And these politicians aren’t God,” said Dianne.
6-year-old Jack Nelson went to the Capitol building in Washington D.C. to meet with politicians and advocate for the Orphan Drug Tax Credit. He and his mother, Tasha Nelson, strive to protest against the ‘Tax Cuts and Jobs Act’.
Future struggles - Orkambi
In Australia, Orkambi - the second precision CF medication after Kalydeco - has been vetoed by the government three times; however, demonstrators continue to fight for its coverage. A similar situation in British Columbia is seen, where demonstrators are demanding a fair drug review, stating that scientific findings on Orkambi were misrepresented. In the United Kingdom, demonstrators are leading a fight to fund Orkambi with the help of Carlie Pleasant, a 28-year-old woman with CF. “When I became a mum to Jude, it was the moment my life changed forever. I had this tiny little human all of a sudden who I loved with every fiber of my being. He was all mine and knowing that he was relying on me for absolutely everything made me realize I never want to leave him. I have always had a lot of fight in me and have never wanted CF to win, but since becoming a mum, I am determined to not ever let CF win,” said Carlie.
Carlie wrote a post on Facebook about the issue and shortly after, it went viral. It even appeared in an article in The Sunday Times. Ian Austin, a member of the parliament, read the article and tweeted it, announcing, “Next month, I will host a cross-party meeting in parliament as part of the campaign to make Orkambi available on the NHS.” Pleasant has also started an ongoing petition to the government. “I don’t want to be the mum who can’t pick her son up from school because I am on IVs in the hospital. I want to be a fully involved, hands-on ‘regular’ mum, who just happens to have CF. My husband and I never knew if we would be able to have a baby, whether I would be healthy enough or strong enough to grow or carry a child, so Jude really is this biggest blessing,” she said.
Stopping the Clock
‘Stopping the Clock’ is a campaign established by the Cystic Fibrosis Trust. The Trust has been continuously campaigning to ensure individuals with CF receive access to life-changing medications and treatments. “The CF community desperately need hope and the chance of a brighter future. We all fundraise – many of us for years, in the hope of a breakthrough drug. Then when one comes along – in this case Orkambi – it is deemed too expensive to provide on the NHS. Our children are suffering and we feel helpless in the face of this terrible progressive disease. Knowing that a drug that has transformed the lives of people in other countries is sitting on a shelf just out of reach is heartbreaking. Orkambi isn’t suitable for everyone with cystic fibrosis, but we hope to reach a deal similar to the one achieved in Ireland recently, where swift access to other CF drugs currently in the pipeline would be included as and when they become available,” said Lorraine Barnes, the mother of two sons with CF.
Most recently, 15 unbiased patient and provider groups, representing millions of Americans, wrote the following statement on Senate’s proposal to revoke the ACA. “Any attempt to repeal the ACA without replacing it with equal or better coverage will leave our health care system in shambles. If the existing law is abolished, 32 million Americans could lose their insurance coverage in the next decade. This approach is completely unacceptable for the patients we represent. Many of these Americans are low-income or struggle every day with pre-existing health conditions, and have come to rely on the coverage the law has provided. The ACA is not perfect, however, and we agree that long-term improvements need to be made, along with immediate action to stabilize the marketplaces. When both sides of the aisle work together, they have always found the most durable and long-lasting solutions to the problems facing our country. We implore lawmakers to sit down in a bipartisan fashion and draft a new bill that will strengthen and expand access to affordable and adequate health care coverage.”
The fight continues
Fights continue throughout the United States, British Columbia, Australia and several other countries in an attempt to tackle rising costs of the pharmaceutical industry and to demand health coverage. Several advances in life expectancy for individuals with CF have been seen in the past few decades, thanks to the continuous support from foundations. Today, people with CF continue to band together as one to fight for the opportunity to live normal and healthy lives beyond the disease.