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Out-of-Country Health Services

Appeal Panel
10025 Jasper Avenue NW I PO Box 1360 Sm Main IEdmonton ABI T5J 2N3 Phone 780-638-38991 Fax 780-422-1958

. Personal Health Number: _ August 5, 2011 Shane Wambolt Fort McMurray AB Dear Mr. Wambolt: Re: Out-of-Country Health Services Appeal Panel Decision for Shane Wambolt

On,July 22,2011, the Out-of-Country Health Services Appeal Panel (Appeal Panel) metto hear Shane Wambolt's appeal of the Out-of-Country Health Services (OOCHS) Committee's May 12. 2011 decision regarding reimbursement for 1) assessments provided at the Cleveland Clinic Foundation, Ohio between August 23,2010 and September 27,2010 and 2) minimally. invasive endoscopic surgery regarding a pineal gland cyst provided at the LA Skull Base Institute in Los Angeles., California on November 30. 2010. The authority of the Appeal Panel is established in the Out-or-Country Health Services Regulation, Alta.Regulaltion 78/2006, According to section 11(5) of the Regula1ion, a quorum of the Appeal Panel consists of 3 members, 2 of whom must be physicians. and one of whom must be either the ethicist or the member of the general public, The Appeal Panel members present at the July 22, 2011 hearing were Dr. Ruth Collins-Nakai (Chair). Dr. Rose Marie oeonzcn, Dr. Alexander Paterson, Dr. Peter Hamilton, Mr. Thaine Olsen (Ethicist), Ms. Donna $paner (member of the public), and Mr. Blair Maxston (non-voting independent legal counsel for the Appeal Panel) .. No conflict of interest was declared by any Appeal Panel member, In addressing your appeal, the Appeal Panel considered the information that was available to the OOCHS Committee at the time of its decision, the Committee's reasons for that decision, and your letter of appeal. Following careful consideration, I reg~et to inform you that it is the Appeal Panel's decision to Uphold the decision of the Out-of-Country Health Services Committee. . . The conclusion the Appeal Panel has reached is based on the following reasons. The Appeal Panel upholds the OOCHS Committee reason that the requested services were elective and prior approval should have been obtained before treatment. Section 2(2) of the Out-ot-Country Health Services Regulation indicates that (2) An application may only be made under subsection (1) with respect to . . (a) elective services, if the application is made prior to receiving the services, or (b) insured services or insured hospital services that are not elective 'services, if the application is.made . (i) prior to receiving the services, or (ii) not later than 365 days after the services were received.

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Shane. Wambolt Page Two In your case, the services were elective, and the application was submitted and deemed made by the OOCHS Committee after treatment was received. The Appeal Panel is did not find supporting evidence in the medical documentation to indicate that urgent care was required from a medical viewpoint. The Appeal Panel found that the expertise to treat your 'medical condition was available in Canada and at least further surgical opinions within Canada should have been obtained prior to obtaining out-of-country services. It was your choice to obtain services outside the country. As such, the Appeal Panel cannot approve your request. On the basis of the services requested being elective, and therefore the application must be made prior to receiving the services, the Appeal Panel agreed to uphold the OOCHS Committee's decision not to approve funding for 1) assessments provided at the Cleveland Clinic Foundation, Ohio between August 23, 2010 and September 27, 2010 and 2) minimally invasive endoscopic surgery -regarding a Pineal Glaiid cyst provided at the LA Skull Base Institute in Los Angeles, Oalifornia on November 30, 2010.. The Appeal Panel sympathizes with your situation,but regrets that it cannot make a decision more favorable to you. The Out-of-Country Health Services Regulation is accessible online from the Alberta Queen's Printer at www.qp.alberta.ca. .

Yours truly, :'l

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Dr. Ruth Collins-Nakai, M.D. Chair, Out of Country Health Services Appeal Panel cc: Honourable Gene Zwozdesky Minister, Health and Wellness

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This is a letter regarding our devastating fight with the Alberta goverment regarding our son Shane Wambolt that required medical help in the united states which could not be done here in canada.We are the parents of shane so we would like you to please read our letter and awaiting your reply. My e-mail address is: Phone number:

CC. Prime Minister of Canada- Stephen Harper Alberta Premier-Ed Stelmach Alberta Health Minister- Honorable Gene Zwozdesky Alberta- Guy Boutilier MLA, Fort McMurray-Wood Buffalo Nova Scotia Premier- Darren Dexter Nova Scotia Health Minister-Honorable Maureen MacDonald Nova Scotia- Sid Prest MLA,Eastern Shore Nova Scotia- Honourable Keith Colwell,ECNS,MLA, Preston

Date: June 12/2011 I'ts with great stress, unbelief and devastation that we have to write this letter. Our names are Phillip and Carol Wambolt and we live in a little community called Grand Desert in the province of Nova Scotia. We are the parents of a 26 year old man Shane Wambolt who is now living in Fort McMurray, Alberta and did live in Grand Desert until moving out west a few years ago. Our son Shane was diagnosed with a cystic tumor on the pineal gland which is not recognized in Canada as causing any problems and no surgery is available to remove it. He was ~ecoming incapable of looking after himself and with his fiance due to have a baby my husband had to leave and go out with Shane to help them. Shane at this time was still working but for safety reasons he was taken from site where his original job was and put in the office .Due to his finances he couldn't leave work so he struggled everyday to go. He was unable to drive so his father or fiance would drive him. He was becoming sicker as the days went on.Come the end of June his father was taking him to work and as he was holding the pail and vomiting he said" dad I can't do this any longer, I rather die." He went to the office and told them he couldn't do it any longer, their reply was we don't know how you did it this long. They didn't want to force him out knowing his severe symptons because of his finances. My faith is very strong so I had many parishioners in many churches praying for Shane. If you could only experience the overwhelming,weakening and shock your body goes into as you sit with all the congregation and pray for your child and then you will know what we went through and we are still praying for your help. Shane wanted me to go out to alberta but financially we couldn't afford it, but a dear friend paid for my trip to see him so we could get his affairs in order including his will.!t was quite an emotional time because I hadn't seen my son for 11/2 years plus my new grandson.1 only stayed a short time because my daughter was back home and my mother was very sick.My husband stayed with shane and his family to keep on helping them while I had to make the heart throbbing journey back to nova scotia by myself. After exhausting all avenues with health care in Canada and coming up aganist a brick wall his only choice was to make a trip to Ohio to rule out any diseases that would have similiar symptons.After a month and all final reports showed he was cleared from any diseases except for the tumor. He was devasted they could not remove the tumor, he came home to die. After the horrifying news, Shane wanted me to come out and financially we couldn't afford it. I't was quite an emotional time,equally emotionally was the news that we discovered a surgeon in Los Angeles who specializes in tumors on the pineal gland .Of course immediately we had to pursue that avenue because Shane was failing fast.

He made an application for funding and submitted all medical documentation to prove that they ruled out any other disease. Due to research we know that if Shane would of waited he would of suffered brain damage due to lack of fluids flowing through the br~in. I tried calling the out of province health care explaining to them his condition because he felt threatened by you people. One particular time was when his fia~ce called me and said the out of province people called and said "if Shane went down they would refuse his application", he was due for his surgery soon. That day was horrifying, as I picked up the phone and heard the panic and crying from his fiance saying "I have to take Shane to the doctor, he can't see and can't stop vomiting and becoming very weak, the pressure is so bad it feels like the top of his head is going to explode."He knew we didn't have the money and we needed funding to pay for the cost of the surgery so I told her I would call the out of province health care in which I did.With my body shaking and tears flowing and pleading for help the only response I got was your son is 25 and he will have to call himself. It felt like we were being tormented for trying to save our son.The suffering that my son was going through was felt by all who loved him.
I

We had to refinance our home because the surgeon agreed to take Shane's case and remove the tumor. Our house finances wasn't enough. Shane tried to get the Alberta government to pay because this surgery was unable to be performed in Canada. We have had videos done pleading for help and asking for donations in any amount stating "EVERY DOLLAR HELPS".we have pounded the streets,knocked on doors, made phone calls begging and pleading for help but cannot come up with the money. When people gave us a donation no matter in what amout $5.00 OR $20.00 A few more tears are shedded thanking them for helping us through our most difficult time in life. Prior to surgery I would plead to God to transfer the tumor to my head. I was becoming frightful to whether he was going to make it or not. We didn't have the money so the hospital and doctor down in Los Angeles .agreed to bill us because they knew how sick Shane was. The payments are $5000.00 a month which we do not have.
I

We were so financially strapped and I was so depressed I was not going to go down while Shane had surgery but a week or so before he called me and asked me if I would go because he needed me. I was so happy that I went because as he held my hand before they took him from us he said "don't worry mom this is my only chance at life and I know everything will be fine, I have an angel looking over me." I have always told him from the time he was born that he had an angel. A few days after surgery he whispered in my ear "Auntie Kye was my angel. At that time I knew he was going to be fine. The extreme pressure on my husband and I has taken a toll on us mentally and physically. We are going to theraphy and with medication I am surviving. My husband has been disabled for many years and is unable to work, this strain has also caused him to have his medication increased. We live off of a very low income.Due to this financial burden

we have to go looking for a place to live because We will be losing our home. The one thing that keeps me going is what my therapist has said "you have given your spn two life's be very proud". Shane is aware of our situation and it is very troubling for him to see what we have been going through. If it was one of your children you would understand how devasting this is. There are times I go down to the beach which is in walking distance from my house trying to figure out if this situation is real. As I sit on a rock overlooking the ocean for many miles out to sea wondering how can this happen in Canada. When you listen to the news there are cases of sick people from other countries whom our government doesn't hesitate to help. Canada helps with devastation all over the world. I keep asking myself, I wonder why my son's life wasn't worth while saving? We know that a young Iboy from Airdrie, Alberta suffered many years with many of the symptons and he was left to slowly die, but thanks to the same surgeon that did Shane's surgery and the hospital in the states they waived all fees to save his life. After the fact, the out of province doctors realized what a horrifying thing they did and his surgery was covered. It was also stated "they would never let this happen again" We knew about the long term effects that Dylan Nielsen suffers everyday from being ignored by the medical system .Through Dylan's mom's advised we knew we couldn't hold off because Shane would of still been waiting and would of never been approved and may of not been here to fight. Also I don't think it is fair how they can choose to pay Dylan's surgery land not Shane's. He has a right to live also. The surgery was a success. He is getting stronger everyday and will beable to go back to work before the end of the year. The many things that people take for granted remains a blessing for him. For instances being able to wake up in the morning by himself. For months he could not wake up on his own, his father and fiance would have to sit him up on the edge of the bed and get a pill in him to keep awake, the tumor caused narcolepsy because the pineal gland is responsible for the sleep part of your brain. Then when they got him awake he would vomit for hours. As you seen in the pictures of the operation that the tumor was big (1.3)cm and still growing and all the webbing around it. How do you think the fluid could flow? The pressure was so bad in his head it would send his body into tremors. Also putting his body into a seizure which he would completely lose vision and go paralized on the right side. Everyday he suffered severe depression. The light was becoming unbearable. Now being able to live a normal life, playing with his son, getting out walking and bascially enjoying life again is a miracle for him because he did not give up and won't give presuing the financial help that he deserves and neither will we.

God bless everyone that supported Shane and us through this gut wrenching experience We would of never made it this far without them. All his co-workers that has finacially and mentally supported him and still to this day they are.They had seen him on his worse days and know how sick he was becoming. In closing I am pleading and begging for our family to be cleared from this debt hanging over our heads.At this we have lost everything but our son, which is the most important thing. We have lost all are dignity and will soon be living in poverty if we lose our home. We are both mentally and physically collapsing from the trauma that the government has caused by the rejections in the pass year.As my husband and I write this letter living over many memories of this horrifying medical devastation a knock comes on the door (June 6,2011) it was a,gentleman that we know quite well from our community.He presentedus with a cheque of $250.00 from the community center to help with groceries this month and as we hugged he whispered "don't cry or you will have me crying" I can't at this point even go in our local grocery store anymore without breaking into tears if anyone asks about our situation with the government. We are ready to go to any media station who will air our story or newspaper that will print it to beg for donations or help in anyway if you won't help us. Sincerely, Phil & Carol Wambolt.

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Fort McMurray-Wood ~f,_f_a_lo_'

From: Sent: To: Subject: Attach ments: Guy Boutilier Wednesday, August 10, 2011 2:41 PM 'gene.zwozdesky@gov.ab.ca' Fw: From MLA Guy swambolt.pdf

Hi Gene, hope u and Christine having great summer. Our 3 year old Marc is keeping us busy. My constituent Shane Wambolt( 26 years old ,father of 18mth old son) who had a rare tumour/cyst visited his Ft McMurray Dr I. Akinjise (, who said he could die If not removed as soon as possible( letter attached) He lost partial sight, couldn't work as it grew. No where in Canada is this type of surgery done. So on his Dr.'s advice flew to Los Angeles and had the surgery. It saved his life. The "Out of Country" bureacracy could not act quickly enough. Thus the young man and family and his parents had to use their Homes as calateral, and now could lose their homes, the bill $260000 ! This was all front page in Nov. when he got successful surgery. Of course the hope was AHS would reimburse as Out -of -Country procedure. He had learned about this as a lady in Airdrie had same rare disease, U may recall helping Rob Andersons constituent. Exact same situation except your Appeals Panel said NO to Mr.Wambolt ... ! Bureaucratic reasons that only you as Minister can overrule. Gene this young family were scared to death, now are going to lose their home. This is wrong. He went by his Dr's advice. Guy Boutilier MLA From: Fort McMurray-Wood Buffalo

Sent: Wednesday, August 10, 2011 02:21 PM

To: Guy Boutilier Subject: From MLA Guy

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Constituency Manager Guy Boutilier, MLA Fort McMurray-Wood Buffalo Tel: (780) 790-6014 Fax: (780) 791-3683