Since I heard about the specifics of Haley’s condition, I’ve been doing a lot of reading and learning. I’m no healthcare professional, but I have been able to glean some details that allows me to speak a bit more confidently about it. The most important detail is that the drug Haley needs, Soliris (Eculizumab), is not approved for use with her condition, despite reports of it working for the very few others around the world who have it. The pharmaceutical company who holds the rights to Soliris has no financial incentive to seek out the drug’s approval. And Alberta won’t accept it’s use because there isn’t enough data to support it.
It's a rare disease. Getting the research volume Alberta Health is asking for is simply not possible. But the research that does exist is more than promising.
Research or not, it's a $700,000/year drug. There is no way that Haley’s family can float that amount.
It’s not like it’s a drug that will incapacitate her with side-effects, either. There are side-effects, but not much different than some people’s side-effects to antibiotics.
But Haley’s life is on the line. I’m not being melodramatic about it either. Within 10 years of having the condition, kidneys shut down, so a transplant would be needed. Haley is in year 7. But the disease isn’t even in her kidneys, so she’d have a high likelihood of damaging the new kidneys, too. The medical regiment she would have without Soliris is significantly limiting, to the point where she may not be able to contribute to the society she so desperately wants to enjoy.
She wants to be a nurse. Because while under treatment, other nurses have been so uplifting for her. She calls it her vocation, her calling, to help other kids when they are in tough times. Something she can’t do if she isn’t healthy herself.
In a letter I sent to Health Minister Sarah Hoffman, I point out that this wouldn’t be the first time that Alberta has found funding for medication that hasn’t yet been approved in Alberta, for another child with a different rare condition. Other jurisdictions, namely the National Health Service in England, are seeking approval for Soliris for others with Haley’s condition. But for some reason Alberta isn’t willing to give Soliris, the only drug that has shown efficacy at all for others with Haley’s condition, a chance.
This is where Wayne Anderson has been called upon for help, and now Brian Jean is bringing it directly to the Premier.
Now credit where it’s due. Premier Notley rightly states that it shouldn’t be politicians making the decision, but rather healthcare professionals. Brian Jean was obviously reading from a script, and missed the point he should have made at that response.
That point was that it IS the healthcare professionals who are telling Haley to use Soliris. Dr. Julian Midgley, a specialist in the field discussing Haley’s condition, has recommended Soliris despite it not having received approval. Why on earth would a professional do that unless they were absolutely convinced it was the best, nay, the only way forward? Why is the Alberta Government not listening to this healthcare professional?
If this scenario was about someone asking for a drug that would simply improve their quality of life, certainly the conversation would be completely different. But this scenario is about trying to ensure that the basic health of a 17-year-old Albertan is maintained, and it is the health care system’s duty to ensure it. At this point it isn’t, not for Haley.
I’ve joined Wayne Anderson (and now Brian Jean) in asking the government to reconsider their position. There is precedent. There is supporting research. There are other jurisdictions seeking approval. But most importantly, there is a young Albertan with dreams and aspirations of her own, to help others who are sick. For someone going through what she has, there is no higher calling.
What more could the province of Alberta want?