WARNING: This story contains images some readers may find disturbing
A Canadian man blinded in his right eye by a water-borne parasite has hit out at the cost of drugs after spending thousands on medicine not authorized for sale in Canada.
Jon Volpe, from Tottenham, Ont., has endured excruciating pain caused by acanthmoeba keratitis (AK), a rare disease in which amoebae invade the cornea of the eye.
Volpe, 32, contracted the parasite in January 2018, just days after discovering his wife was pregnant with their first child.
The father of one believes he contracted AK while wearing contact lenses in the shower at home or at the hockey rink.
Volpe shared his story with CTVNews.ca after reading about a journalist in England who went public with his battle with the same infection earlier this month.
“I started to experience pain in my eye in late January and was misdiagnosed for three weeks until I started getting proper treatment,” Volpe told CTVNews.ca.
“I had my cornea scraped four separate times and did around-the-clock drops for three straight days.”
At the peak of his treatment in 2018, Volpe was using up to 84 eye drops per day.
Out of pocket
And so far he has spent around $11,000, from his own pocket, on a drug called Mitlefosine, which is unavailable in Canada, but Volpe is convinced saved his eye.
“It seems outrageous that we as Canadians, with free health care, have to pay out of pocket and a substantial amount at that,” he told CTVNews.ca.
Volpe returned to his job as a producer for a shopping channel in July 2018, before a “vicious” relapse.
“A doctor at Toronto General prescribed Mitlefosine because my issue was time sensitive,” he explained.
“The first prescription needed to come from Germany, it was $6,200 for 37 days of treatment.”
Volpe has since had three more prescriptions of Mitlefosine.
“Because the powder comes from the States it is not covered,” he explained.
“The cost is $1,600 for 28 days and my final cost was over $11,000 just for the pills. This doesn't include drops that aren't covered by mine or my wife’s benefits plan.”
Volpe believes Mitlefosine should be covered by the public health-care system. “It 100 per cent saved my eye,” he said.
However, the drug does come with side effects including vomiting and decreased fertility, according to Volpe, who became emotional at the thought of not having another child.
He became tearful when describing his wife’s support through that hellish time, while she was pregnant with their son who is now 10 months old.
Volpe’s doctor was given permission by Health Canada to prescribe Miltefosine through the Special Access Program. This allows physicians, on a case-by-case basis, to gain access to drugs which are unavailable in Canada.
These requests must be for access to drugs for treating patients with serious or life-threatening conditions when conventional treatments have failed, are unsuitable, or are unavailable.
Although Volpe was prescribed the drug, he was denied funding for it through Ontario’s Exceptional Access Program.
“This product is currently not funded as it has not completed the established national and provincial drug submission process of review and/or funding negotiations with the manufacturer have not been completed at this time, and therefore, the executive officer has not made a funding decision for this product for use for the specified indication,” Ontario’s Ministry of Health wrote in a letter to Volpe.
Before a drug is authorized for sale in Canada it must be approved by Health Canada.
“The drug authorization process is initiated when a manufacturer submits an application to Health Canada for review. Health Canada has not received an application for Miltefosine,” Health Canada told CTVNews.ca in a statement.
“The SAP considers requests of Miltefosine for these treatments. The current manufacturer supplying the drug via the SAP is Knight Therapeutics.
“The decision to supply a drug via the SAP is at the discretion of the manufacturer and Health Canada cannot compel a manufacturer to supply a drug via the SAP.”
CTVNews.ca asked Montreal-based Knight Therapuetics why it has not submitted Miltefosine for approval in Canada.
Knight Therapuetics president Samira Sakhia told CTVNews.ca that Impavido (Mitlefosine) is approved in Germany, the U.S. and Israel for the treatment of leishmaniasis, a parasitic disease spread by sandflies.
She said this disease is “extremely rare” in Canada and when it does occur here it is usually found in people from countries where leishmaniasis is endemic such as India, Nepal or Bangladesh.
“Knight has had the product available in Canada through Health Canada’s Special Access Program for several years,” Sakhia said.
“At this time, we are working with Health Canada to work on speeding up and simplifying the supply chain of bringing product to Canada on a per patient basis. As we implement these processes and see cost improvements, we will revisit the product pricing.”
Volpe is now down to seven eye-drops a day, but doctors have warned him that AK can remain dormant for years. He is hopeful of the possibility of a cornea transplant next year.
Volpe would like to raise awareness of AK to prevent others from contracting it.
“Acanthamoeba is a parasite which is actually ubiquitous, it’s present in water and soil,” Dr. Shahzad Ihsan Mian from the Kellogg Eye Centre at the University of Michigan explained.
“Eye infections are not common overall, but patients who wear contact lenses are at increased risk of getting any kind of eye infection.
“When it does occur it’s a very serious infection, it’s very difficult to treat. The best thing to do is try to prevent it.”
Good contact lens hygiene is the best form of prevention against the organism, Dr. Mian said.
“If you are careful in terms of how you clean your contact lenses, store them and wear them and avoid situations like taking a shower with contact lens in your eyes or going swimming in a lake with contact lens in then you can really avoid getting this type of infection,” he said.
Overnight wearing of contacts is also associated with increased risk of infection, according to Government of Canada guidelines.