Advocacy & Mad Letter Writing Skillz

This blog was not born overnight, I had been thinking about it for a while. What finally convinced me to launch it was when I started my letter writing campaign. I thought it was awfully ridiculous that there is no government funding for us people who use feeding tubes. I wrote this letter that follows to the Minister of Health. After waiting a few weeks and not getting any response, I decided to take it to the next level. I put a call to action on Facebook asking friends and family if they could sign and send another, less personal, letter I had written. My post kinda blew up overnight, getting almost 100 shares and lots of people willing to help! I was amazed. Fingers crossed this will lead to some new and helpful policies in the province to help other people like myself. Since my first letter is where this all started, I thought it most definitely deserved a spot on my blog.

Dear Sir,

In July 2015, after 9 months dealing with illness, I was diagnosed with gastroparesis. Gastroparesis means that my stomach and intestines don’t move food along properly causing nausea, vomiting, stomach pain, malnutrition, etc. Because of this condition, I am required to have a feeding tube in order to receive adequate nutrition. Unfortunately, this illness is typically chronic and I may never be able to receive nutrition orally as most do. This would mean that I need to rely on a feeding tube long term.

Because I am now 19, I can no longer receive my tube feeding formula from public health. This means that we are forced to pay out of pocket for all of my formula, bags, and other medical supplies associated with enteral feeding. The formula alone is very costly. Each can costs about $10.00 and I need 5 cans a day. This adds up to about $18,500 a year. Not only is the food itself expensive, but the pump used to deliver the formula requires special bags and tubing that must be replaced daily for hygienic reasons. The bags cost about $300 a month or $3,600 a year. The formula and bags combined adds up to about $22,000 per year. This does not include the syringes needed to deliver medication and keep the tube clean, the gauze pads to put around the site of my feeding tube to keep the skin clean, and other associated costs.

It is very disheartening that the New Brunswick government does not have any programs to assist families in situations like mine. As previously mentioned, I could need to rely on this tube for the rest of my life which would cause significant financial strain on my family and myself. For people like myself, these feeding tubes are our lifeline since we can’t consume food orally. Just like anti-rejection drugs are vital for transplant patients, feeding tubes are vital for those who can’t eat. Yet, only one of these groups of people receives assistance from the province. I understand that there is a hyperalimentation program in place but, in order to be part of said program, I would need a health card which I don’t qualify for as my parents do not qualify for assistance, but they certainly cannot afford an additional living cost of $22,000 per year either.  My parents are self-employed so they have no protected retirement fund therefor keeping their savings intact is necessary. The only way I could receive social assistance is if I were to live independently but I am not able to do so at this time because of my health issues.

The lack of health programs for those with hyperalimentation needs also causes issues with pursuing education in my field of choice. Because of the high costs associated with tube feeding, I no longer have the financial liberty to return to university outside of the province once I am capable of caring for myself. I was studying neuroscience at Memorial University as there are no New Brunswick universities that offer that program. The only way to be able to afford to continue my studies would be to have some sort of assistance financially for my formula and supplies. The program currently in place, if I were able to participate, would not offer me the liberty to leave the province and continue to receive help.

There needs to be a plan similar to the prescription drug plan in place for those who need enteral or parenteral feeding. It is unjust that those who want growth hormones can receive supplementation but those who rely on feeding tubes in order to live can not. Enteral nutrition is a reality many families are faced with. There are hundreds of conditions that can require some form of supplemental feeding from gastrointestinal disorders to cystic fibrosis to cancer. As aforementioned, the costs associated with this type of nutrition are high and can cause financial strain on those in need because we have no choice but to pay for the supplies and formula needed out of pocket. An assistance plan for people like myself would allow us to live and thrive despite our medical concerns. It would allow me to return to school outside the province and still receive financial aid as a New Brunswick resident. It would allow me to live life without the financial constraints of this illness.

I urge you to strongly consider putting in place a program for enteral and parenteral feeding similar to the New Brunswick Prescription Drug Program that does not require those in need to have a health card.

Thank you for your consideration.

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