MDS secures international cooperation to help Canadian teenager with malignant blood disorder

Oct 15 2009

The Myelodysplastic Syndromes (MDS) Foundation says a wide range of international cooperation has been secured to help 18-year-old Wes Laporte of Ontario get treatment for a life-threatening condition in the US.

Wes was diagnosed with MDS – a malignant blood disorder usually affecting the elderly. MDS can progress to a serious form of leukemia called acute myeloid leukemia (AML), and in Wes’s case that has happened. With the help of the MDS Foundation, Wes is now being evaluated for a possible bone marrow transplant at the US National Institutes of Health. But concerns remain over his health and the money to pay for his travel and treatment.

“Here I was freaking out because I was sitting at home getting extremely sick, having as many as three blood transfusions a week, and being hospitalized for numerous infections,” said Wes Laporte. “Now I’m grateful that I have a treatment plan and so many people in the US and Canada have stepped in to help me.”

A cutting-edge drug called VIDAZA® is now available to help treat MDS. But Wes was mistakenly told it was not available in Canada. With the help of EcuMedical, a Canadian facilitator and advocate for health care options, Wes was brought to Michigan for care by a specialist, Dr. Farid Fata, where he was able to get the drug. However, his condition has now deteriorated to the point where he needs more aggressive treatment.

“Wes is a brave young man with a rare disease – it is seen much less often in patients under the age of 65,” said Kathy Heptinstall, Operating Director of the Myelodysplastic Syndromes Foundation. “For the past four or five years, Wes’s treatment has been marked by medical missteps and disappointments in what Wes calls ‘a potentially fatal situation.’ We are pleased he is finally receiving the attention he needs and we will continue to offer support and expertise.”

Although VIDAZA is not yet approved in Canada, it is available through Health Canada’s “Special Access Programme” (SAP), which allows drugs awaiting approval to be distributed in Canada to patients with serious or life-threatening conditions who are not helped by available therapies. More than three dozen MDS patients are now on the drug in Canada. However, Wes was not made aware of the program, and instead was helped by EcuMedical.

“The most important issue to EcuMedical when we were introduced to Wes and his parents was to save his life, so when they thought he could get better overall treatment in the US, we were pleased to help bring him to Michigan,” said Tracy H. Bevington, EcuMedical CEO and Founder. “The last thing we want is for Wes to carry additional worries about the cost of his medical travels and treatment. We are pleased so many people from two countries have come together to help him, and we are counting on still more to pitch in with fundraisers and donations."

EcuMedical has guaranteed Wes's medical costs, and is working to raise funds to help cover those expenses through the "Wes Laporte Trust Fund,” with the help of the MDS Foundation and other international organizations. People who wish to offer additional help to Wes and his family or would like to learn more about AML or MDS can get more information at www.mds-foundation.org, or by calling 1-800-MDS-0839; or EcuMedical at www.ecumedical.com, 1-866-277-9868.