Sunday, November 05, 2006

Halloween, An Inspiring Group of Kids, and What Goes Up...

Well, it's been a busy week, to say the least. Isaac and Gabriel spent Halloween at the hospital while Isaac got his treatment done. We made sure that we went out trick-or-treating the night before and visited Nanny and Poppa and Great-Granny and Great-Grandpa. The kids had a great time, and they were both so cute! There was a bit of trick-or-treating done at the hospital as well, which is great for the patients at the hospital. What a wonderful place...

We also heard some great news from our friends in Kansas regarding their son Holden and his quest for ERT. They heard at the end of the week that they do qualify for ERT for Holden and will begin soon. What a relief for the family! We fully remember getting the great news and how anxious we were to start. Please drop by their site (listed with our links on the right) and send them a quick note of support and congratulations.

While we're thrilled that Holden will be getting ERT, it really puts the drug company's (Biomarin) priorities in perspective. The Guifoyle's got their diagnosis and were contacted by the drug company regarding treatment. They also had a case-worker assigned to their family and had help applying for funding. Excellent support from Biomarin, which is exactly what families need when they are going through such a difficult transition in their lives.

Rewind to our diagnosis and the NON-help that Biomarin gave to us. We made contact with the drug company to ask for support in having Naglazyme approved for use in Canada and got no assistance. We pleaded to access the drug at a reduced rate because we were going to bankrupt our family and friends and anyone we could think of. Their cold response was "that would affect our price in Canada." In essence, no help from Biomarin to get the drug approved, no help from Biomarin to try to pay for treatment ourselves, and no assistance in our fight with the provincial government to get treatment funded for Isaac. In our view, this is completely wrong and truly sheds light on Biomarin's goals -the bottom line. In a country where there is a reasonable assurance that they will receive funding for providing this ridiculously expensive treatment for affected children, they will provide as much assistance and support as needed. In Canada, where there is no application pending for the drug to be approved and there is no assurance that funding will be forthcoming by governments, officials at the drug company disappear. They don't care about families and their struggles unless they are going to be paid for providing treatment. Sickening, truly sickening. What Biomarin should be doing is assisting all families and all affected children. Set up a compassionate program for those affected and where funding isn't going to be forthcoming. At a million bucks per child per year, they're going to be making enough money. Perhaps they can make their money AND feel good about the children they are helping. Lets not let these kids die because of financial considerations.

Onto other matters and what goes up, must come down. Things have been going so well with treatment and we're seeing a lot of changes in Isaac. However, got a bit of troubling news recently that reminds us that we're still fighting a progressive disease and we have to find a cure. While at the hospital last week, Dr. Clarke discovered a prominent heart murmur in Isaac and noticed that his heart was beating fairly fast. We quickly went for a chest X-ray and an ECG. We see a cardiologist on Wednesday and have an Ecocardiogram scheduled for earlier in the day. Hopefully this will prove to be a non-issue. But it again proves how incredible The Hospital for Sick Children is. They got Isaac in for tests ASAP with very little waiting period. We see a specialist a week after the initial concern was discovered. We know of and read about many families that have to wait a lot longer to deal with these issues. We're lucky to have Sick Kids' as our primary care center for Isaac.

The Isaac Foundation would also like to thank a group of grade 6 girls at Winston Churchill Public School in Kingston, Ontario. Last year, the girls were assigned a project that asked them to find a way to make the world a better place. They choose The Isaac Foundation as their main focus and worked hard to raise money to help us find a cure. They met every Friday to go over ideas and at the end of the school year, they presented the Foundation with a cheque for $500! This September, the girls approached me to tell me that they are still meeting weekly and they are still determined to help us find a cure for Isaac and other children affected with this disease. On Halloween, they went out canvassing in support of the Foundation and we want to thank them for their continued support. It's amazing how truly empathetic these kids are towards Isaac and his battle!

Take Care,
The Isaac Foundation

1 comment:

Anonymous said...

I am sorry to hear about your troubles with Biomarin. I wish they could just help everyone that need the drugs they produce. However, I also understand there position. They are a business, not a charity or non-profit organization. There goal is to make drugs, heal people, and therefore make money. They are currently just a startup company and are not even in the green. Your case would have a much stronger hold if they were a large company making extravagant money, but that is not the case. They are trying to get on their feet in the biotech field, and every penny (or million) is very important to them at this point. In order to become a full fledged company to make more and better drugs, they need to watch their bottom line. This year should be a good year for them, and they should finally turn a profit. Maybe once this happens they will be more keen on showing compassion.