Medicare Coverage for Prosthetic Eyes

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Seeking Medicare Coverage For Prosthetic Eyes

I appreciate having this opportunity to tell you my story. In doing so, please understand that it is impossible to relate every detail, but I will give you the highlights.

At the age of two, I was diagnosed with (JRA) Juvenile Rheumatoid Arthritis. Inflammation from this disease spread to my eyes, (Uveitis) which was later complicated by Glaucoma and cataracts. My numerous hospital stays lasted days, weeks, and even months. A large portion of my childhood memories are those spent in hospital, during birthdays, and every Holiday on the calendar, including Christmas. Many of my surgeries and treatments took place in Montreal away from my family in NB, since with three younger siblings to care for, it was impossible for my parents to remain with me for such long durations.

Beginning with these early childhood struggles, it does seem like my life has been a series of episodes where I've had to fight for everything that a "NORMAL" person takes for granted.

Again, after spending six years away from my family at the Halifax School For The Blind, I decided as a stubborn teenager, that I was either going to attend public school at home in NB, or I'll simply quit! To my knowledge, I was the first (TOTALLY) blind student to enter and later graduate from the New Brunswick public school system. Although there were many obstacles to overcome, this head-strong teenage decision opened the door for a number of the blind students who successfully attend our public schools today.

It's a natural part of life for a young person to want to leave the nest, earn their own way, buy groceries and pay the bills. This process would have been a little smoother if I wasn't confronted with the "NOT UNDER MY ROOF" syndrome. In searching for an apartment, prospective landlords would say, "Oh no dear! You might burn yourself on the stove, could fall down the stairs,"...and to top it off,..."you might flood the toilet and not realize it for days!" One landlord conceded to the idea of my renting from them, with the condition that I have a roommate to look after me, in other words, a babysitter! Finally I was able to secure an apartment, where I began my independent journey, my piano teaching career, and where I lived ALONE for 18 years.

Given my background, it is not surprising that my entire life has been centered around health matters. It is a well known fact that Rheumatoid Arthritis is classified as an autoimmune disease, an illness where the body tissues are attacked by its own immune system. Throughout my life doctors have frequently cautioned me to seek immediate medical attention if I so much as get a sore throat, as many infections will trigger joint inflammation, and the infection itself will be more difficult to control with an autoimmune system.

An inevitable deterioration on my body would take it's toll, after many years of joint and eye disease. I am now sporting two titanium knees, and a stainless steel pin that fuses two bones together in one foot. It was also necessary to remove two very painful eyes, but fortunately they have been replaced by ocular prosthesis.  Thankfully, knee replacements are covered by NB Medicare. The provincial government however, decided that Medicare will only cover ocular prosthesis for children age 18 and under. For those over 18, the current prosthetic eye costs are at $2000 per eye, and it is necessary to replace them every five years. There are also additional cleaning and maintenance costs of $80 per eye, twice per year. For patients such as myself with bi-latteral ocular prosthetics, the cost is of course double. If prosthetic eyes are not properly maintained, and replaced at five year intervals, infection will develop in the eye socket. This will require hospital stays and medications, which will result in Medicare paying thousands more than if the patient had been given the correct medical ocular prosthetic care in the first place.

For the past decade I have approached our various governments, in an effort to have Medicare coverage of prosthetic eyes to be extended without age restriction. The answer has been a flat out "NO!" Instead, the government has "PASSED THE BUCK" to DSD, Department of Social Development, A-K-A, Social Services.

As a former client of DSD, I can tell you that my experiences were not pleasant. DSD had authority and access to search my bank account at any time. I was to report my piano teaching income on a monthly basis. There were regular unannounced visits by department employees who would ask the same insulting questions, "Can you dress yourself,....bathe yourself,....and can you feed yourself?" This would be followed up by an apartment inspection where they would search my closet and under the bed looking for men's clothing or footware, so that I might be accused of being financially supported by some man. I was infuriated to be degraded this way, and to be treated like a criminal. Needless to say, when I was married in 2004, it was a happy day to be free of that system!

In 2014, I actually resigned myself to calling the Department of Social Development. I inquired about the formalities and the criteria of being accepted in this program. For example, I asked if there is a cut off or maximum income whereby an individual would not qualify. Here was the woman's response.
"No, there is no cut off income. For instance, if a person earns $100,000 annually, and their expenses are $150,000, then that person would still qualify. DO YOU UNDERSTAND?" she said in a very snarky tone.
My response, "Yes, I understand the math, but I don't understand the concept. If a person is making $100,000 per year and can't live within their means, then perhaps they should sell one of their cars and learn to take the bus!" Might I add, she was no more impressed with me, than I was with her.

In 2015, I circulated a petition to the best of my ability, which was directed to NB Medicare regarding prosthetic eye coverage. The petition collected 312 original signatures from the regions of Fredericton, St. John, Moncton, Grand Falls, and Miramichi. I maintain that this is a health matter as individuals with prosthetic eyes have received them due to birth defects, disease, or injury, none of which are the fault of the recipient. For individuals with prosthetic eyes, this is life changing and traumatizing all at the same time, and an issue and financial burden that they are faced with throughout their lifetime.

Despite my numerous statements to the government emphasizing that I cannot go down that DSD road again, on April 13th 2016, I received a letter from Health Minister Victor Boudreau stating that they have no plans for Medicare coverage of prosthetic eyes, and that I should refer my case to DSD.

This was entirely an autocratic decision on the part of the New Brunswick government. There was no investigative research, nor were there any efforts made to compile the facts concerning patient prosthetic eye care. My petition even suggested the possibility of a co-pay system, a program which has been successfully adopted in Nova Scotia which does not discriminate against age, disability or financial status, however, the NB government without any consideration, has turned a blind eye and hastily dismissed this proposal. Neither was the office of the ocularist contacted at any time, to gather information or to discuss optional coverage plans.

So now here I am, back to square one. DSD just doesn't seem like a viable option, and it shouldn't be forced on me. Insurance companies won't accept me due to pre-existing health conditions. I never really had a chance there, since my diagnosis began at age two.

I completely understand that it seems like many people have their hand out for something from the government. On the other hand, I know that the government is flawed in many ways, and wastes money paying for items that are not a necessity.

As it stands right now, I am faced with paying $4000 every five years, along with $320 annually for cleaning and maintenance costs. These prosthetic expenses are of course on top of my Arthritis medication costs, pills and weekly injections, which I pay out of my own pocket at a significant amount.

This extremely cold and shameful decision on the part of the government, has left me feeling uneasy and insecure about the future of my health and over all well being. Will I end up with infection, (MORE PAIN), and the inability to have prosthetic eyes? If it goes that way, will I be able to continue my piano teaching career that I've worked so hard to establish over the years? Let's be honest, if you had a choice, would you send your child to a piano teacher with two eyes, or to "Miss Empty Eye Sockets" down the road? If I join the astonishing 85% of unemployed blind Canadians, will the province pay me a monthly pension so that I can sit at home and be a non-contributing citizen in my community? The further this goes, the worse it gets! As my very wise Mother quoted in our local New Brunswick newspapers, "The government should not put obstacles in the way of blind people who are working and contributing to society. If two doctors say you need prosthetic eyes and you declare your earnings on your income tax return, then that is all that should be required. End of story."

However, as a generally positive person, I would like to think that this decision can be overturned. If you have an understanding and compassion for prosthetic eye recipients such as myself, I would be so grateful to receive your help in spreading the word via social media, signing this online petition, calling your MLA, or for that matter, contacting the Health Minister Victor Boudreau himself. Oftentimes, the ones with the greatest needs are the ones who get cast aside, but with your support perhaps we can change that trend together!

Cheryl Gillespie