Huron-Bruce Member of Parliament Ben Lobb with Advocate and Saugeen Shores resident Erin Little, March 21 in Ottawa.

MARCH 28 UPDATE: After being denied twice, Olivia Little has been approved to stay on Cystagon for 90 days. Following the 90 days they will have to continue reapply until decisions are made.

Hub Staff

Local mother and advocate Erin Little went to Ottawa alongside Huron-Bruce Member of Parliament (MP) Ben Lobb to fight for 8-year old Olivia Little and her right to life-saving medication after being denied twice for Cystagon, a medication that Olivia has been on since July 2011.

Lobb presented a motion Monday, March 19 at the Standing Committee on Health. The motion which was given to the committee the week prior and included information on Cystagon, Olivia and Procysbi a new drug that includes the same medication as Cystagon but acts as a slow release. Olivia’s current medication is a 6 hour release, whereas the new drug would be taken every 12 hours.

The motion asked the committee to “undertake a study of Health Canada’s recent decision to make Cystagon unavailable and of the impact of this policy change on the approximately 75 children and young adults in Canada suffering from the life-threatening effects of cystinosis.”

In a March 21 interview, Lobb recalled the Standing Committee Meeting that ended with a vote of 5-4 against Lobb’s motion, the recorded vote saw Liberal members of the Committee vote against the motion while Conservative and NDP members voted for it.

During the meeting Liberal MP John Oliver asked Lobb if the motion could be deferred so the Committee could have more evidence brought forward, in which Lobb stated, “I’m quite happy to have the vote right now but I would just like to say that Mrs Little’s daughter has been denied twice and I think that should be evidence enough for all committee members to want to say ‘how can it be that a mother and her daughter get denied twice.’”

On Tuesday, March 20, through the Speaker in the House of Commons Lobb addressed Health Minister Ginette Petitpas Taylor and in our March 21 interview with Lobb he said the decision sounds reasonable on paper but that it doesn’t represent the reality that the families who use the Special Access program face. “[The Littles] were only given a 90 day life line and that’s not a great way to live a life,” he said.

The Huron-Bruce MP said there needs to be a better way for Health Canada to determine what should or should not be accessible through the Special Access program. “When a drug works and it’s less costly than the new drug that’s been approved I think all Canadians and tax payers should really question how that could be,” he said.

Lobb went on to say that the regulatory framework surrounding rare diseases in Canada has gone by the wayside and that that is something that needs to be addressed. “Having it in a regulatory framework makes a big difference in getting earlier diagnoses and medication to patients before damage is done,” he explained.

During their time in Ottawa, Lobb and Erin Little met with the Executive Director of Court and Legal Representatives and Kathryn Nowers, Director of Policy, Office of Minister of Health.

Little said she came away from the meeting with the feeling that pharma comes before patients and said it was “really disheartening.”

While the Standing Committee voted against the motion to help her daughter, Little, who was present at the meeting, said that the Health Committee viewing the motion was extremely important for the Cystinosis community. “The way [Ben Lobb] presented it was so well done, his process, his timing, everything was done really well,” she said. “Even though we were denied, it wasn’t a reflection on Ben, it was reflection of a piece of paper and Mr Oliver’s denial of accepting the motion.”

Little went on to say that it’s on record that they are going to allow access to Cystagon “based on clinical rationale as per your physical” but said it’s extremely important to recognize that there are flaws in looking at the two drugs as the same drug. “There’s a difference,” she said.

See also: Local family takes on Health Canada over drug change

Huron-Bruce MP Ben Lobb addressed the House March 20 on behalf of the Little family.