Medical Suppliers Profitting Off Terminally Ill Chidren - The Rotten Vermon Stench Of The Medical Supply Business

THE COST OF BEING SICK by Brad Fisher

Most healthy people do not realize or understand the perils caregivers and patients must deal with on a day to day basis. You think that if you get sick you will be cared for. Here in Canada we have a socialized system of medicine. Don’t think for a minute we aren’t paying for this medical because we have very high taxes and these taxes pay for our medical. While our system is socialized patients with very complex needs are not having these needs all met. Our daughter has a life threatening condition called Spinal Muscular Atrophy Type 1. While our daughter is physically immobile she has 110% cognitive function and can communicate but this article is not about my daughter’s illness as much as it is about medical suppliers and the system.

Since our daughter’s diagnosis I have noticed the incredible cost of medical devices for children with life threatening disease and other children with disabilities. What gets me is how prices of equipment and supplies don’t get any less expensive even while our dollar keeps rising close to parity with the U.S. dollar. I’ve noticed just looking on line that the cost of items is in many cases 30-60% less than suppliers are selling them for here in Canada. Because I was once in the retail business I completely understand how retail operations purchase from manufacturers and distributers. I know that items a retailer purchases cost less when they purchase in bulk or just have an account with a supplier or manufacturer. Then retailers turn around and sell items at the manufacturers suggested retail price which can often times be 40 to over 100 percent more than the retailer paid for these items. I understand people have to make money that is what business is all about.

What about these businesses that supply the government or in our case our socialized medicine? Why is it that the government who routinely does not cover 100 percent of the cost of items for our daughter, that have to be additionally funded by charities, cost more than when our dollar was 40 percent less than the U.S. dollar. Why does our government or socialized medical prefer to pay a local supplier sometimes 50% more for an item because they want service vs. paying 50% less from a supplier in the states thereby not forcing families to seek additional funding from charities to purchase equipment for their children!

If we look deeply into the business practices of our provincial government purchasing from local medical suppliers I guarantee we will uncover graft, over billing, and cheating on every level. I see medical suppliers as vermin feeding off profits made from sales to families with terminally ill children not caring if the item exceeds the programs allowable funding knowing full well charities will cover the rest. Yes I believe in business and profits but when government health programs are not paying the full share of the cost of equipment thereby making the public pick up the tab over and above the taxes we pay through donations to charities you have to stop and ask why? Who is in charge? Why is there no accountability? Why is the government denying equipment and other services or only funding portions of them? Why is the government paying too much for products?
I have done some comparison shopping recently on a piece of medical equipment our daughter needs and found the government could save almost $2000.00 purchasing the item in the U.S. The argument the government has is what if we need to service the item. Even if the item had to be serviced and paid for it would still be less expensive than buying from local retailers not taking the high dollar into account. Government medical contracts do not create competitive pricing. The lack of competition in Canada has bred an environment of suppliers feeding off the people that need the most help. It’s time for our government to step in and oversee purchases made and what these suppliers are doing so that children with life threatening illness are not denied equipment needed to improve their quality of life. It’s just not right that people need to go to charities to raise money to buy medical equipment while medical suppliers laugh all the way to the bank on the backs of children with life threatening illnesses, the elderly and the challenged. Shame on you medical suppliers; How do you look your children in the eyes knowing your pricing may get a child denied a much needed piece of equipment that has a life threatening illness and shame on the government employees not standing up to bad policy!! Shame, shame, shame on you!

Shira Is The Face Of Help Fill A Dream

Dear family and friends. Please vote for Help Fill A Dream. Help Fill A Dream is a front line organization that fulfills children's dreams that have life threatening illnesses. Help Fill A Dream aslo helps with medical expenses, purchasing medical equipment and more. Please vote for Help Fill A Dream. This costs nothing but 3 minutes of your time and lots of money is being given away that we could win for this incredible organization. Help Fill A Dream purhcased, delivered and erected the playground in our back yard!!!! go to : If you go to www.helpfilladream.com and click on the Aviva banner, at the top of the page it takes you to the HFAD idea....With apologies for their less than intuitive site. and please every day until the competition is finished , often and pass this around. Thank you from the bottom of our hearts!

Think For Yourself, Question Authority, Create Your Own Reality!

Living with a child that was supposed to have died before the age of 2 is a wild ride. Every day I pinch myself because Shira is here and thriving against all the local doctors expectations. What made my wife and I disbelieve what the doctors were saying to us. Reliving the early journey we took with our daughter diagnosed with a terminal illness went something like this. At 4 months of age after many months of knowing something was wrong with our daughter, seeing 4 doctors and 1 chiropractor, all of them blaming us as knew anxious parents. We were told to take drugs, drink wine, get counselling everything under the sun as help for our daughter except actual help for our daughter. Until I read Dr. Jerome Groopman’s book How Doctors Think I really thought medical doctors really knew what they were doing. It was not clear to my wife and I that biases also crowd doctors minds making them misdiagnose or not diagnose properly like in our situation. Luckily for me my wife has the ability to think way outside the box, research and ask very tough questions in a linear manner as not to offend.

When Shira was finally diagnosed at 4 months of age clinically and then genetically with Spinal Muscular Atrophy type 1 and we were given the horrific statistics of this disease our sister in law informed us there was a doctor who specialized in treating SMA patients. Upon hearing about Dr. John Bach we felt we had to take Shira to see him as there might be hope but Dr. Bach was in New Jersey in the U.S. As my wife made a phone call to Alaska Airlines to make reservations she struck up a conversation with the ticket agent. My wife told the ticket agent we had to get to New Jersey to see a doctor because our daughter was sick and there was a specialist there. The ticket agent asked Maxine if our daughter had SMA. We were blown away. It turns out the ticket agent had a son now living in Denmark that also had a grandson with SMA. The ticket agent kindly gave our phone number to his son. The next day I got a call from Josh Mortenson who told me his entire story about his son’s diagnosis and how the NIV Protocol of Dr. Bach had saved his son’s life from the medical system and all the conventional thought around SMA.

The truth in the words Josh told me, his experience so close to ours and many others spurred us on to seek out what Dr. Bach was doing. The next thing that happened is we joined smasupport which confirmed that our story and experience with the medical system was not unlike every one else’s experience. Everyone else’s experienced also included being told there was nothing they could do, there was no hope, take your child home and love them. But this was not the case.

There are things you can do to help patients whether they are very sick or just have a broken leg. Our kids are very sick and they need a lot of support. I read everything I could voraciously and also compiled and libraried every single bit of data I could find on the treatment and care of SMA patients. I realized early on that all the doctors advising us had absolutely no information on the treatment and care of SMA patients other than end of life care (just let your child die) or tracheostomy and conventional treatment with it.

We realized early on that there were 2 camps of thought in the SMA world and that was 1) There are treatments which can insure your child does not die an untimely death while treatments are being sought.
2) Let your child die.

All of the doctors we ran into before Dr. Bach were of the philosophy “Your child will have no quality of life you should let them go.” Who are these people? Do these doctors have sick children themselves? Do they have children? What are their religious beliefs? How many SMA patients have they worked with on a daily basis? Do they know of any treatments for SMA? Do they know of any doctors that treat SMA patients as a specialty?

We had a lot of questions and the more we asked the less answers there were. So why didn’t people know about the NIV Protocol of Dr. Bach? Why do people just follow what a doctor says to them without questioning?

There seems to be 2 camps of people. I have met people that love to care for children with disabilities and think the world of these children. I have met people that struggle horribly with regular children and can’t seem to keep their lives together even thought they have 2.5 healthy children, a mortgage, a career, cars and take holidays and their lives are hell.

Is life hell if you have a disabled terminally ill child or is life opened up for you? I was certainly a different person before Shira’s diagnosis letting myself be controlled by people in positions of power believing education, money, position etc. proved they should be listened to. But the reality is these things are fabricated, created. If these people in these positions go home and close the door and stop doing what it is that put them there in the first place those positions would cease to exist.

What doesn’t cease to exist is our child’s disability and what it takes to care for these children. I have had people tell me to let my child die because it will ruin my real estate career. We have had people tell us that our child is a gift from God and God gives you what you can handle. There are many ways to perceive your reality and many ways to deal with one’s own reality. To tell you the truth trying to justify and figure out our reality based on what other people thought started to become very confusing. We realized that no matter how much we struggled with what was happening with us we had to look past ourselves and start to deliver the NIV Protocol to Shira. As Dr. Bach says, “Non intervention in life threatening illness is a self fulfilling prophecy.” We had to get past our pain, our suffering, the words of others, the lack of others experience, the distorted views of others with no experience in these matters and start doing something for Shira.

My father used to tell me all the time, “If you want something done right do it yourself.” Well this was it. Here was Dr. Bach and his 2 published books “Management Of Patients With Neurological Disease” “Non Invasive Ventilation” and our doctors with no experience, no publications nothing. It was obvious what we wanted to do. If we wanted our child to live as long as possible in hopes there is a cure while she is alive then we had to intervene. We couldn’t wait for a system that was so hung up on policy, doctors personal biases, lack of resources, lack of knowledge etc. etc. we had to do something now.

As soon as we got in touch with other parents on smasupport we realized our experience was not our own it was endemic and attached to any disease with a bleak prognosis. Doctors give up when there is no cure. There was a huge chasm between what doctors told us and the reality of what parents were doing and the results we saw. The internet is Shira’s life saver. Because of the internet we were able to seek out doctors that do care, that believed there was a quality of life to be delivered and to be lived. We realized that doctors while being trained basically the same way its how doctors think that make them different and set them apart. Some doctors are totalitarian and its there way or the highway while some doctors give you many choices, help educate you, work with you and support the families wishes and desires. It would be wrong to lay the whole blame for the terrible journey families have to take through a valley of misinformation and horrible support. Many families themselves have serious internal strife among family members which does not allow for an environment of high level care.

So what it all comes down to is perception and the creation of what reality you want and then advocating for it. There is no one reality that has to be adhered to there are choices. We as parents can choose to look at our children and put labels on them like normal, disabled, terminally ill what ever you wish. The label I have chosen is the label human being. Shira is as much a human being as anyone else and we will deliver what she needs to live as good a life as she can the same way we do for our other child and each other. This journey called life has no one way and nothing is guaranteed. We only have our perceptions and biases created by our early socialization of how we were brought up and all the life experiences we have gone through. In the end our perceptions of our reality have to be let go to be able to support another human being. In simpler terms it means, “taking a walk in someone else’s shoes.” Caring for children with Spinal Muscular Atrophy type 1 is an emergency situation. It takes dedication. You have to deliver Multi disciplinary intensive care to your child daily and become adept at doing medical procedures you never thought you would have to do. It’s a choice to do these things. I have watched people put 100 percent of their energy into fundraising and choose to let their children pass. I have watched people choose not to do anything and let nature take it’s course. I have watched parents trache their children. I have watched parents do what we are doing following the NIV Protocol of Dr. Bach. I have seen everything in between.

It’s my hope that by reading what I have written here you will questions authority, gather information, speak with other parents and create your own reality based on perceptions created through experience not solely on other people opinions. The worst opinions we have heard are from those in the medical field while the best information, life saving information has also come from the medical field. As they say in business Caveat Emptor (Buyer Beware). Don’t believe everything you hear and don’t compare yourself with others as it will lead you down the wrong path. Look past yourself and see your child/patient and do what you know is right based on fact not fiction. Research, research, research and speak with lots of parents with children living passed the biases and misinformation of uncaring health practitioners who don’t care.

Diet and SMA ~ Our children have different baseline "NORMAL" so calculate for it stupid!

The problem is is that the dieticians working with doctors (even the good doctors) calculate diet to the 10th percentile using the CDC growth charts for regular children. Doing this is NUTS!!! if you take into accounte the physical makeup of an SMA patient based on Dr. Kelly's findings i.e. that "that sma type 1 patients have muscle mass as low as 5-10% that of a regular child and that muscle mass makes up around 40% of your body mass" if you calculate to the 10th percentile the patient would be obese as far as fat to muscle ratio. Dr. Kelly also states that only the Age/Length charts should be used to insure the child is growing properly. When a child stops growing properly is anyone's guess when it comes to SMA Type 1 there is no data at all let alone even clinical or anecdotal there is none. The main thing to remember is that if a dietitian recommends you do something without doing skin fold tests and other tests to properly estimate the bodies physical makeup they are only guessing. And because they have guidelines set out by the government they have to follow they have to calculate to the 10th percentile to avoid liability problems. This is why the Kennedy Krieger CP Quadrilgia chart is so important becasue at least its a population with closer physical traits than regular children and if you are going to use a chart it just makes more sense. Here is an explanation below from Dr. Kelly to Jeanna Huette years ago. This information is basically what the AA Diet is based on as far as calculating the diets. I advise getting skin fold tests done on your child by a qualified dietitian that does it a lot and is good at it. Shira has muscle mass around 15% that of a regular child. it's important to note the information below should be applied to what ever diet you deliver to your child and that the diet should be calculated optimally and re calculated often. The goal is to deliver the optimal nutrition without excessive volume to prevent reflux, and retain as much movement as possible. Our children are sedentary and have very low muscle mass so there needs are far different than regular children. The trick is to find the balance and deliver exactly what they need and like the rest of us they need a healthy diet not just processed food which I see all the time building diets for people. The type of tube and placement are also important when calculating diets but in my opinion the crap most dietitians suggest these children to eat is nothing short of ridiculous with very little thought put into it.



, “For such an "average" child, muscle constitutes 40% of body weight, whereas for the average SMA-I child, muscle is at most only about 10% of body weight, and often only 5%. Similarly, because about 40 to 50% of caloric expenditure is from muscle metabolism, a child with SMA needs far fewer calories, often only 60% of that recommended for age. For nutrition recommendations, physicians are taught to go by the book. However, unfortunately, there is no nutrition book written for SMA, and dietary recommendations made using standard scales are just not appropriate. For example, when a child is very small for age (below the third percentile), as some SMA children are, physicians are taught to use the "weight-for-height" chart to specify an ideal weight for a child's size rather than age. However, again, the weight-for height charts were developed for children whose body composition is normal or at least potentially normal when better nourished, which never is the case for SMA. Thus, the published weight-for-height charts are not valid for SMA and should never be used.



Although what I have written here explains the basic principles behind the special weight and nutrition goals for SMA, in practice I usually look only at the length chart to make sure a child's linear growth has been steady. If so, then the rest of my recommendations are based on what a child looks and feels like, not a number that I calculate. However, for physicians who are not familiar with SMA and muscle disorders of similar severity, the calculations I have presented usually help them approach the problem correctly and avoid the almost universal problem of overfeeding in SMA.” 



I also want to point out that just because an SMA Type 1 child is alive passed the age of 2 doesn't mean they are healthy for an SMA Type 1 child it just means they are alive. Many dietitians and parents can't look passed this fact and overload the children and fall back on the knowledge just that the child is alive so in the SMA Type 1 world must mean they are doing well. our children have a different baseline normal than regular children and most doctors and dietitians do not want to believe this. Food has many psycho social dynamics attached to it. Some parents have serious eating challenges themselves which directly affects their children and the same goes for doctors and dietitians and their own problems directly affect what they see before them instead of using science, logic, observation within our community etc. basically science. It's pathetic!

Modified Running Stroller

CLICK HERE FOR LINK TO ORIGINAL ARTICLE

Four-year-old Shira Fisher loves to play, sing, and most of all, go on runs with her dad.

Shira was born with Spinal Muscular Atrophy Type 1, a genetic disease that causes muscle weakness and affects voluntary muscle movements. Her condition requires that she be kept in a supported, reclined position.

Scott (left) with Brad and Shira at the UVic track testing the modified running stroller.

Scott (left) with Brad and Shira at the UVic track testing the modified running stroller.
When Shira was a baby, her father, Brad, would take her for runs in her stroller. She loved these outings and even participated in marathons with Brad. But as Shira outgrew her stroller it became increasingly difficult for the two to continue this activity. Brad even purchased an EASyS running stroller, but it was not meeting their needs.

The EASyS stroller had a fixed front wheel that made turning difficult. The design of its rear suspension made Brad tire quickly. And the tray beneath the stroller, meant to hold Shira's medical equipment, was too low to the ground and would frequently bottom out. Running had become more of a burden than a joy, so they stopped the activity altogether.



Yet Brad still wanted to run with his daughter. After all, running gave Brad some much-needed exercise, a break from his full-time care duties, and an activity to enjoy with Shira. For Shira, having her dad push her around the track was a blast!

As former CanAssist clients, they knew CanAssist could help. So Scott Lagadyn, a member of CanAssist's mechanical engineering team, set about modifying Shira's old stroller.

A close up of the new pivoting front wheel.

A close up of the new pivoting front wheel.
Scott removed and then completely rebuilt the front structure and wheel, which was making the stroller so difficult to turn. He replaced it with a pivoting wheel taken from a BOB brand stroller. This high-quality unit includes a wheel "lock-in-place" option.

"Brad now has the option of a pivoting wheel, which allows for easy turning, or a straight wheel," Scott explains. "By locking the wheel in place, the stroller is able to remain stable at higher speeds."

Scott eliminated the rear suspension, replacing it with the rear axle from Shira's brother's old running stroller. The added rigidity means easier running for Brad.

Lastly, Scott raised the medical equipment tray several inches so it no longer bottoms out and interrupts Brad and Shira's run.

When Scott delivered the stroller, Shira was ecstatic! She wanted her dad to run with her right away. Brad ran up and down the street to test the stroller with his little girl. It was clear that Shira was in her element; when Brad stopped to chat with Scott, Shira impatiently pleaded "again, again."

Shira was not the only one delighted with the modified stroller.

"Running around the University of Victoria track with Shira was incredibly emotional and brought tears to my eyes," says Brad. "Once again Shira and I are able to enjoy the freedom of running together!"

With the little girl safely nestled in her modified stroller, Brad and Shira are back in training mode and are preparing to run the Victoria marathon this fall.

Happy New Year 5771

Wishing our Family and friends a happy and sweet new year.
L'Shana Tovah Tikotevu V'techataimu- Shana Tovah Umtukah. May all our prayers pierce the Heavens, especially our prayers for Peace in Israel and around the world.

Summer Time Fun

I don’t know where to start as we have been having so much fun. Sammy has been in many different camps this summer. Besides the camp he has been going to since he was 4 years old the Victoria Conservatory Musical theatre camp was a big highlight for Sammy and for Shira. As many of you well know I am a huge advocate for staying away from social gatherings of any kind with Shira. Whenever you are around more than your own family your chance of infecting Shira with something goes up exponentially. Being summer and knowing how slow our local pediatric intensive care unit is we decided to take Shira to Sammy’s recital. Sammy had been practicing the songs from Annie for many days so of course Shira also learned them. Where ever we go Sammy and Shira sing It’s A Hard Knock Life and The Sun Will Come Out in unison. It’s the cutest thing you’ve ever heard and seen. I was walking down the street the other evening with Sammy and Shira in her stroller. The streets were very quite and you could here their voices ringing out singing It’s A Hard Knock Life. Shira in her stander certainly makes those words ring a little true except for the fact we don’t torture her at home like Ms. Hanagon. Anyways Shira was blown away by the beautiful stage and of course the recital. Shira screamed when the young girl playing Ms. Hanagon appeared on stage. It was an amazing production and Sammy was the only boy to get a part out of the chorus. Sammy played the policeman chasing down Annie and he did a great job!

Yesterday we took Shira to her first movie and it was an IMAX movie no less. The movie opened up with a 6 story Orca Whale jumping at us. The movie was about whales and it was absolutely beautiful of course. Most of the scenes were from South America and it just made me want to get on a plane. Shira absolutely loved it and she kept singing Aerial’s little theme song from The Little Mermaid all the way through the movie. When the movie finished Shira said, “Yeah!” After the show we walked through the whole B.C. museum which she also enjoyed.

On Thursday I took Shira to Sammy’s outdoor camp but I have to say it was not all that exciting and I signed Sammy out and Shira, Sammy and I took off together. We made a trip to Shira’s school www.sides.ca to see if anyone would be there. Shira will be attending Kindergarten this year at home but the school will be sending a teacher to our home. I of course took Shira and Sammy to the wrong campus and I guess they called where we were supposed to go because when we got there they were all waiting for us. Shira kept saying, “I’m so excited, I’m so excited!” The whole staff was so welcoming and loving towards Shira it was a beautiful thing. It was really like someone was on our side, really understood Shira and could see how much potential she has. While we were at the school Sammy felt the need to push Shira in her wheel chair. Sammy is so proud to know his sister is going to school. The staff really treated Sammy well and really understand the dynamics between siblings and the role they play in the family unit with a child with challenges. We had the greatest time and it was very energizing to be there.

Today we are off to the Johnson Street Market then maybe a visit with the goats at Beacon Hill Farm.