"The Ontario government has failed my child"

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Published on Sunday, 29 November -0001 16:00

Written by editor

PAOV — You can make a difference. Sign now to help petition starter Lauren and her son, George.

14,917 have signed Lauren Dempsey’s petition. Let’s get to 15,000!

George currently has Respiratory Syncytial Virus (RSV) and is in the PICU at SickKids Hospital with an intubation tube in his mouth. RSV causes... an infection of the lungs and respiratory tract and presents as a mild to moderate cold in children. Most children have had RSV by the time they are two without any complications.

RSV is incredibly dangerous and life threatening for George, as he has a rare neuromuscular disease - X-Linked Infantile Spinal Muscular Atrophy. Due to this diagnosis, George has been provided the vaccine since January 2020 through the cold/flu season every year, until this year when he “aged out” of the program. The program concludes when a child reaches the age two. We were able to get George the vaccine last year because he turned 3 after the applications went in. Information and criteria for the program can be found here - ONT RSV Prophylaxis Program. For the entire duration of time George received the vaccine, he never contracted RSV.

This year in September when the applications were being reviewed for RSV Prophylaxis eligibility, I sent in an application for George to receive the vaccine via the programs “Special Clinical Circumstances Medical Justification Form”. Along with this form was a letter of support from the Staff Respirologist at SickKids. This request was ultimately denied by the Ministry of Health.

The denial letter reads in part:

As you are aware, the Program provides ministry funding for palizumba where the patient either satisfies the Program’s listed clinical criteria or the patient’s special clinical circumstances warrants prophylaxis to prevent serious pulmonary adverse events and/or hospitalization as a result of RSV complications.

Clearly the government did not take into consideration all of the information they were provided and simply issued an autogenerated denial without the proper due course. The application included such information as:

• George had RSV in January 2020 – he was intubated and contracted bacterial pneumonia as a result. This visit resulted in an almost 2 month stay at SickKids hospital
• He has a very rare neuromuscular disease in which there is NO treatment, only supportive care. His formal diagnosis is X-Linked Infantile Spinal Muscular Atrophy affecting the UBA1 gene
• He has MANY life sustaining medical devices including but not limited to : Nocturnal Bipap, Cough Assist, Suction Machine, G-Tube Feeding, Nebulizer, Wheelchair, Stander, Communication Device, Orthotics, Spinal Brace…

In addition to the letter received from the Ministry Of Health with their generic excuse of an explanation, there are three main reasons a denial is issued.

1. The cost : Yes, it is expensive and that must be taken into consideration. However, I am certain that this hospital admission has cost the government and tax payers 1000X what the vaccine would have cost. Not to mention the extraordinary personal and emotional cost to my family.
   
2. Weight based dosage : In simple terms, the more the kid weighs the more of the vaccine is required. The oath of do no harm. Is it necessary to give a child 2 needles a month for 6 months? Is it economical? George has been the SAME WEIGHT FOR TWO YEARS. He has a neuromuscular disease which means he doesn’t build muscle or put on weight anywhere near the same rate as an able bodied child. I am sure if you asked George (or any reasonable person), he would much rather get a couple needles a month as opposed to the countless needles, IVs, Intubation, medication etc. he has received (and will continue to receive) during this hospitalization.
   
3. Efficacy : It is assumed that the efficacy of the vaccine is decreased as the child gets older. How does the vaccine know how old my child is? Even if the efficacy decreased to 10% - that’s better than doing nothing when it comes to a child’s life.

This vaccine would NOT have prevented George from contracting RSV. It would however, likely have prevent the degree in which this illness would have taken him down. It likely would have prevented an ICU admission and TWO intubations.

Given the advanced known triple threat of RSV / FLU / COVID this year, the government should have done something, ANYTHING.

(1) Started the administration of RSV vaccines earlier than October 31. Ideally when school starts - where the infections spread!

(2) Broadened the criteria and increased the age limit to at least 5 for a minimum of 2 years post covid to cover these kids as they became school age.

The Ontario Government has failed my child --- My child is not the only child --- It needs to change.

George is a fighter, a survivor and a strong little man.

It’s our turn to fight for him.

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