Men with PKU demand coverage for dietary supplement

Andrew Robinson
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Formula to treat rare blood disorder costs hundreds of dollars per month

The rare blood disorder phenylketonuria (PKU) affects one in 12,000 people according to the non-profit group Canadian PKU and Allied Disorders (CanPKU).

It used to take John Robinson of St. John’s only a day and a half to use a full can of the dietary supplement Phenyl Free 2 to treat a rare blood disorder he was born with called phenylketonuria. No longer able to afford the formula since losing his subsidized coverage, Robinson has not been taking it for the last two months. — Submitted photo

For Newfoundland and Labrador, that would equate to approximately 42 people who lack the necessary enzyme to break down protein in food.

That’s why people such as John Robinson and Andrew Ryan cannot understand why the government will not guarantee full coverage for the costly dietary supplement they are supposed to take to avoid the consequences of leaving PKU untreated.

“For the low amount of people who are diagnosed with PKU on the island, why can’t we get coverage and yet every other province does?” Robinson said.

Robinson uses Phenyl Free 2, a synthetic formula that comes in a one-pound can in powder form. A can costs $45, and Robinson would typically make his way through its contents in a day and a half. He combines that with a low-protein diet that’s consistent with what would be considered a vegan diet.

“It’s a very strict diet. It’s fruits, vegetables ... basically anything that’s not meat or dairy.”

Babies are screened for PKU. The disease can cause an intellectual disability if not treated following birth. If left untreated later in life, PKU can lead to intellectual disabilities, seizures and other health problems.

In Newfoundland and Labrador, there are two formulas approved for coverage up to the age of 18 through the provincial health plan. Beyond that age, PKU sufferers can get formula costs subsidized depending on their level of income. Other than P.E.I., Newfoundland and Labrador is the only province to not guarantee formula coverage for adults, according to CanPKU.

Ryan, who at times has gone years without taking the synthetic formula since turning 18, has experienced mood swings he attributes to leaving his PKU untreated.

“If I don’t have the formula, your life is deteriorating,” he said. “It affects your moods. It affects your motor skills. Pretty much everything. ... It’s stressful living with it.”

The 26-year-old would like to regain coverage for PKU, but has not been able to do so, even after Ryan’s employer recently laid him off.

“I’m not able to afford it given my situation,” he said. “It’s not right and it’s not the way it should be.”

Robinson lost his coverage last summer because he was making too much money — he’s not aware of the exact cut-off point for coverage. For the last two months, Robinson has not been using the formula.

“They’ve basically made it unaffordable for me to live, to the point now that it would actually be a better idea for me to move away, even to somewhere as close as Nova Scotia, where I could basically save myself $900 a month and live a healthier lifestyle.”

He now worries what the consequences will be for his health to not be using Phenyl Free 2.

“It might not happen to me today. It might not happen to me tomorrow. But it could happen.”

Liberal Health critic Andrew Parsons met with CanPKU president and CEO John Adams last fall and wrote Health Minister Susan Sullivan shortly thereafter requesting information on PKU services provided by the province.

“We’re basically dealing with approximately 40 people in this province, so there’s not a great number, and I certainly don’t think there’s a great cost,” he said with regards to the notion of government fully funding formula coverage.

An inquiry was also made about the potential to fund KUVAN, a prescription medication that lowers Phenylalanine levels, through the provincial drug program.

Parsons received a response letter in January that indicated the government — through the Atlantic Common Drug Review — had contacted the makers of KUVAN about the possibility of covering the medication, but asked the manufacturer to provide additional information. It did not receive the requested information.

Robinson would also like government to consider covering other formulas to treat PKU that have lower fat content. He also notes some provinces fund the cost of specialty foods for PKU sufferers (Newfoundland and Labrador does so for people younger than 18).

The Telegram contacted officials with the Department of Health and Communities Services requesting comment on the feasibility of expanding formula coverage and funding additional formulas. It did not receive a response prior to deadline.

Twitter: @TeleAndrew

Organizations: Phenyl Free 2, Department of Health and Communities

Geographic location: Newfoundland and Labrador, Nova Scotia

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Recent comments

  • elizabeth nagy
    April 24, 2014 - 17:12


  • PKU Mumma Bear
    March 13, 2014 - 22:21

    "Wild Rose" please take time to research the disease Phenylketonuria and read for yourself how reliant PKU people were on the government back before Newborn Screening was introduced. They were institutionalised, heavily medicated and were not able to reach their full potential because of this disease. Please ask yourself how much does it cost for untreated PKU as opposed to treated?... IMHO everyone should have access to the medicine that they require and deserve....Spare a thought for the PKU community at least you have the luxury of a healthy mind and body...

  • Andrew Ryan
    March 13, 2014 - 14:28

    As a person who actually has PKU and struggles with it i can certainly say that it's financially impossible for me to ever get ahead in life at home in my own province. At 26 years of age I've respectfully worked for 10 years of my life. The reality is, if not treated, we people ultimately endure brain damage to the point where it slows you mentally and than physically. I'm starting to see how it's affecting me in recent years and it would be wise for the government to see that it would be more cost effective to cover the formula. Why wait to immobilized a group of people to a point where they can't function, get I'll and possibly die. We aren't asking for a lot. We are just asking for a fair fight. I worked hard for the little money I earned before I was laid off indirectly related to this disorder, the fact is they wanted a quarter of my gross earnings and they leave you in a positions where it's provide for your family or remain healthy and functional. Giving this scenario, as a person who wants to succeed in life, I don't understand why they make me feel like welfare is a valid option. That's not the route I want to ever have to take.

  • Amy Goodwin
    March 13, 2014 - 10:43

    You sort of dumbed it down a little... If untreated, a child with PKU can lose an IQ point per month, leaving them severely mentally retarded. Being untreated as an adult leads to a multitude of problems. My son is 10 and has PKU. I grew up in Labrador and I had my son in Alberta. Coverage here is FOR LIFE, as it should be. Not just until you're 18. I am very happy that I had him here where he is better off medically. Here is a link of untreated PKU patients. There is no good reason to NOT cover PKU patients FOR LIFE!!!

  • John Adams
    March 13, 2014 - 10:21

    NL is the worst province in Canada for access to medical treatments for PKU and needs to step up to national and international standards. The medical foods or synthetic protein formulas mentioned in the article are paid for as medicines in other provinces, even in Alberta. Shame on the policies of NL Health Ministry. Every baby borne in NL is tested for PKU so the treatments need to be accessible.

    • Megan Walsh
      March 13, 2014 - 13:13

      Couldn't agree more John; the province needs to meet these standards before there are higher costs for them in the long run

  • gerry
    March 13, 2014 - 10:10

    Wow... just read the guy does have a job & thus pays taxes? Must be nice 'wild rose' to be able to reach into your pocket & shell out $900 a month like it was chump change. I'd bet dollars to doughnuts if it was was one of yours, you'd be singing a different wow...D:< bty, what kind of handle is 'wild rose' |-O

    • Wild Rose
      March 13, 2014 - 11:42

      and how long untill the welfare bunch comes in and abuses it.

  • Wild Rose
    March 13, 2014 - 09:25

    Don't we hard working tax payers pay for enough all ready? Rely on yourselves sheeple in stead of having the goverment nanny state to everything. Get a job and pay for this stuff your self.

    • Megan Walsh
      March 13, 2014 - 13:10

      Wild Rose, perhaps you should read the article more closely. Both of the individuals described in this article have/had jobs and simply cannot afford to pay upwards of $900 for a medical food which they need. Would you prefer the taxpayers to pay their hospital bills every time they have a seizure, or better yet, to pay their assisted living costs when their state of being becomes impaired to the point that they cannot take care of themselves? Better yet, let's pay for their welfare AND the costs of their formula when their mental functioning becomes impaired to the state that theses individuals cannot work and learn to the same degree as others. Because that is the sick reality of this situation; the government will pay for these people's formula if they are on welfare (a 'double whammy' cost in my well-informed opinion) instead of paying a MUCH lower cost to provide them of what they need. Thank you Telegram for this informative article, I truly hope that the province can start to understand that PKU patients need preventative care. While there may not be a high number of these patients in the province, I would think that basic logic dictates that it would be in taxpayers best interest to support the medical needs of these patients NOW instead of paying for their much more expensive medical needs AND their living expenses years down the road, because that is the unfortunate reality of this disorder; there is a wealth of scientific research which shows that the impairment these individuals face if not treated with their medical formula is debilitating to the extent that they cannot be contributing members of society. I think Newfoundland and Labrador could certainly use the contributions of these 42 people, instead of brushing their needs aside and subsequently complaining (as the ignorance of Wild Rose so nicely demonstrates) when there are higher costs to be paid down the road. Megan Walsh PhD Student, Faculty of Business - Memorial University

    • John Robinson
      March 13, 2014 - 14:40

      Thank you Megan, I couldn't have put it better myself. Especially the ignorance part..

    • John Robinson
      March 13, 2014 - 17:42

      "White Rose" would you care to weigh your opinion now. I look forward to it.