Shantee Anaquod is finally getting the life-saving drug she needs.
On Tuesday afternoon (Nov. 21), the province approved funding for the 23-year-old UBC student to receive Soliris, a drug that treats the rare disease Atypical Hemolytic Uremic Syndrome (aHUS) and costs $750,000 per year.
This comes after a Nov. 20 announcement by B.C. Health Minister Adrian Dix that the province will now cover the costs of Soliris on a case-by-case basis.
Shantee was diagnosed with aHUS shortly after Thanksgiving, and has been undergoing dialysis and plasma exchanges in hospital ever since. The ultra rare blood disease B次元官网网址� which affects between 100 and 150 Canadians B次元官网网址攃auses a protein to be built that attacks the bodyB次元官网网址檚 own healthy cells, leading to blood clotting and kidney failure.
Previously, Shantee was denied coverage for the drug by both the B.C. government and her extended medical, despite other provinces like Ontario and Quebec covering the costs.
B次元官网网址淎fter this was brought to his attention, the Minister asked the ministry to review coverage for Soliris provided in other jurisdictions, along with evidence from the past two years and advice from clinical experts in B.C.,B次元官网网址� said Laura Heinze, manager of media relations and issues for the Ministry of Health.
B次元官网网址淎s a result, the expert expensive drugs for rare disease advisory committee co-ordinated by the Provincial Health Services Authority will now review recommended exceptional case-by-case requests for Soliris for aHUS and make funding recommendations to the Ministry. In making these decisions they will be using a framework proposed by BCB次元官网网址檚 leading nephrologists.B次元官网网址�
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Shantee went through a review for Soliris coverage early Nov. 21, and by 1 p.m. was celebrating approval with her family.
B次元官网网址淚 was relieved, not only that thereB次元官网网址檚 a chance of getting better, but also I didnB次元官网网址檛 have to fight anymore,B次元官网网址� Shantee said. B次元官网网址淚t was exhausting.B次元官网网址�
B次元官网网址淚tB次元官网网址檚 beyond amazing,B次元官网网址� added ShanteeB次元官网网址檚 mother, Jennifer, a Langley resident.
B次元官网网址淭hereB次元官网网址檚 just no words.B次元官网网址�
ShanteeB次元官网网址檚 doctor was on standby will his cellphone all day waiting for a call from the committee.
B次元官网网址淎s soon as he knew, he came up B次元官网网址� and I was going down to get some lunch for Shantee B次元官网网址� and I saw him, he was on the phone, and I saw him give me a big thumbs up,B次元官网网址� Jennifer said. B次元官网网址淚tB次元官网网址檚 just amazing.B次元官网网址�
Shantee began her first treatment on Wednesday, and is hopeful she could be home from the hospital by Christmas.
B次元官网网址淚t was about 45 minutes and really easy to do and I woke up feeling better,B次元官网网址� Shantee said. B次元官网网址淚B次元官网网址檓 not sure if the medicine is kicking in yet or if it is a placebo effect from all the good news.B次元官网网址�
Jennifer said the process to receive the Soliris has been frustrating, as ShanteeB次元官网网址檚 condition worsened each day she did not have the drug.
She was scheduled to go for a kidney biopsy on Nov. 23 to determine if Soliris can help them regain function. If the damage is too severe, she will need a kidney transplant and will be required to take Soliris for that operation as well.
Also frustrating, the family received little feedback from the government, Jennifer added.
B次元官网网址淣obodyB次元官网网址檚 received any response from the letters or emails,B次元官网网址� she said.
B次元官网网址淭he only reason I spoke to anyone was that I forced myself into the press conference B次元官网网址� Somebody tipped me off that it was happening, and I went to his (Dix) MLA office and forced myself in. ThatB次元官网网址檚 the only reason heB次元官网网址檚 had any contact with me, other than that I havenB次元官网网址檛 heard a word from anybody.
B次元官网网址淎nd (Premier) John Horgan announced that they were working closely with the family. We havenB次元官网网址檛 heard from them at all. Like not once.B次元官网网址�
Prior to her approval, ShanteeB次元官网网址檚 family had a campaign to raise $100,000 for three doses of Soliris. Each dose costs $28,000, and they are administered every two weeks.
Now, the $37,475 that has been raised will go towards ShanteeB次元官网网址檚 recovery and a kidney transplant, if needed.
B次元官网网址淏ecause sheB次元官网网址檚 been sick for so long, and so severely sick, itB次元官网网址檚 going to be a really long haul for her to get better,B次元官网网址� Jennifer said.
COST OF SOLIRIS B次元官网网址楨XCESSIVEB次元官网网址�
On Tuesday afternoon, the ministry revealed the framework for patients seeking Soliris coverage. The patient must have a confirmed diagnosis of aHUS and evidence of active organ damage; they must have tried plasmapheresis as a treatment option first; they must be assessed throughout the treatment to ensure they are seeing improvement of their disease; and they must be assessed at six and 12 months to confirm if the drug therapy needs to continue.
B次元官网网址淭here are at least 50 patients across Canada who have received Soliris through exceptional public coverage today. We should be learning from those cases and leveraging the value of our public health care system to better inform provinces and territories struggling with these challenging decisions,B次元官网网址� Heinze said.
B次元官网网址淭hat is why B.C. will also be asking that the Provincial Renal Agency lead and work with other B.C. clinicians to evaluate the cumulative experience of B.C. and will be inviting other jurisdictions in Canada to participate.B次元官网网址�
The Ministry of Health agrees that the cost of Soliris is too high. Heinze said that the manufacturer, Alexion, is charging Canadians 21 per cent more than other countries, like the UK. From 2010 to Q3 of 2017, the company reported revenues of $14.2 Billion U.S. from Soliris.
B次元官网网址淚n September 2017, the Patent Medicine Price Review Board found that the price Alexion Pharma set for its drug Soliris is excessive and ordered the company to pay back excessive revenues and lower its price to match the lowest of the other comparator countries,B次元官网网址� Heinze said.
B次元官网网址淏.C. supports the Patent Medicines Price Review BoardB次元官网网址檚 findings. We understand that Alexion will be appealing the Review Boards decision and B.C. will be seeking to become actively involved in the appeal. We would also strongly encourage our partner jurisdictions and patient groups to lend their voice to this as well.
B次元官网网址淭he health of our public drug plans and our ability to help patients and families is dependent on us working together to hold companies like Alexion accountable for the outrageous prices they set. We will continue to take action to protect rare disease patients and public funders from exorbitant drug costs.B次元官网网址�
ADVOCACY GROUPS OPTIMISTIC
The B次元官网网址� an organization that represents 23 non-profit and charity health groups across the country, including B次元官网网址� is praising the B.C. government for their decision.
B次元官网网址淚 am very pleased that Minister Dix and the leadership of the BC PharmaCare Program have chosen to provide coverage for this life-saving medication in B.C.,B次元官网网址� said Dr. Ganive Bhinder, executive director of the Better Pharmacare Coalition, in a press release issued Nov. 21.
B次元官网网址淲e know that there are enormous cost pressures in health, but the Minister has demonstrated an openness, and a willingness to listen to patients and we applaud the approach the Ministry has taken in this case.B次元官网网址�
AHUS Canada is pleased as well, however they believe the process to get Soliris funded could have been much faster.
B次元官网网址淲e at aHUS Canada are very happy with the decision of the B.C. Ministry of Health to fund Soliris to aHUS patients on a case-by-case basis,B次元官网网址� said Michael Eygenaam, vice-chair of aHUS Canada.
B次元官网网址淲e hope Shantee makes a full recovery B次元官网网址� that her kidney function returns B次元官网网址� She has been without Soliris far too long and we are concerned about permanent damage due to the delay.B次元官网网址�
Eygenaam said their organization asked the previous Liberal government a few years ago to fund Soliris for aHUS patients, and had brought the issue froward to Dix as well in September.
B次元官网网址淭his delay was not necessary,B次元官网网址� he said. B次元官网网址淭hey could have had this B次元官网网址榚xpensive drugs advisory committeeB次元官网网址� in place before Shantee and others became ill in order for those patients to have had more timely access.B次元官网网址�
Eygenaam believes that a program in B.C. should be created in collaboration with the health ministry, aHUS specialist physicians, patients receiving the treatment and their families, Alexion and aHUS Canada. In his opinion, England has the best system for access, using a country-wide expert centre with special diagnostic facilities staffed by aHUS experts.
B次元官网网址淲e want to be sure that the new committee is qualified, having extensive knowledge of aHUS and its treatment, making their decisions on the latest science. If they weigh their decisions mainly on cost, they will likely make unbalanced decisions, considering the cost too heavily over the specialist opinion,B次元官网网址� Eygenaam said.
B次元官网网址淲e respect the provinceB次元官网网址檚 need to contain costs and will be monitoring that balance. We also want to be sure that any aHUS patient in B.C. who has lost their kidneys in the past due to aHUS have access to treatment that would allow them to have a successful kidney transplant. We will speak out for patients if they are denied coverage when they need it.B次元官网网址�
miranda@langleytimes.com
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