Open letter to Ontario provincial party leaders
Dear Premier Kathleen Wynne, PC Leader Doug Ford, and NDP Leader, Andrea Horwath:
What will you all do to reform the social assistance system? I offer these suggestions. Caseworkers need to get people believing you will help them with all the education and skills training they need to be competitive in the workforce. Those on Ontario Disability should have caseworkers assigned with the main responsibility of helping them answer these key questions: How can I help you have a life filled with purpose? Do you want to work part-time? Are you interested in doing some volunteer work? Provide incentives that will make volunteering an option for people to consider such as a $300 monthly increase in their welfare or O.D.S.P. income rather than the current $100 monthly bonus. Allow people on social assistance to earn up to $500 before deducting anything from their monthly income. Reduce the deduction rate from 50% to 25% after that. When I participated in one of the province-wide sessions on what could be done to improve the social assistance system our group and all the others agreed $500 more per month would make a huge difference in the quality of their lives. We need to treat those on Ontario Disability and those on welfare who are working hard to get a job or go back to school with the dignity they deserve. It just isn’t logical to give them below the poverty level income expecting they can afford nutritious food that would make them look healthier when they go to job interviews. If we are to truly get the full value for taxpayer dollars spent on education initiatives we must address their inability to have a healthy diet because of insufficient income.
When I was on welfare, if I was an employer, I wouldn’t have hired me. I was gaunt. I had a poor diet of high starch, cheap processed foods, and high sodium because of the food I would eat from food banks. I was thin as a rail. I would cry as I looked at all the resumes and cover letters I sent out. I sent out so many of them that I could have wallpapered my bedroom with them. There were times I asked God to end my daily suffering, and just take me home to be with Him. I had enough of proving my worth under the Mike Harris government. It was only because of that faith and the help of His people that I didn’t commit suicide. That trying time reinforced in me the vital importance of treating everyone with dignity. It instilled in me a purpose to be an advocate for others being unfairly treated.
The programs of many European countries need to be seriously studied and applied that give every citizen a basic yearly income. If one gets a job or does volunteer work that amount would be considerably larger. When people have more disposable income they spend some of it on goods and services. This serves to help businesses make a larger profit. They can reinvest some of it into employing more people.
I am painfully reminded of what it was like for me in Mike Harris’ Ontario when I was on welfare. He cut rates by 21.6%. I received $520 a month. The room I was staying in a home as shared accommodation was $400 monthly. That left me with $120 to eat, travel on the T.T.C. to job interviews, and for the essentials of daily living. If it hadn’t been for the help of family, friends, and a caring Salvation Army family and community services worker with things like groceries, I wouldn’t have made it through that difficult time. I was transferred to Ontario Disability because of being diagnosed with pernicious anemia a.k.a. B12 deficiency in 2001. That diagnosis took 38 years from the time I was born.
After a long day of looking for work on a hot and humid summer day, I welcomed going back to my bedroom to unwind. I reached into my right pocket for a T.T.C. bus token. It wasn’t there. I reached into my left pocket. The token wasn’t there. I had no other money. I approached a woman. I offered to give her the remaining amount on my phone card in exchange for a token. I will never forget how she looked at me with eyes of disgust. She treated me like a beggar. She snubbed her nose at me and walked away. When I checked my right pocket again there was a token there. I breathed a sigh of relief. The memories of that day are with me still.
That day my hope took a nose dive. I experienced what hope looks like when it dies a little more each day. I never want to feel that way again. I speak up for those being treated with indignity. I never want them to feel the way I felt that day. I look back on all I have accomplished in my life in spite of the health challenges. I say a prayer of thanks for those who never gave up on me.
Having been in social services work, I have seen what the death of hope looks like in someone’s eyes. You never forget it. There is no light in their eyes. They can’t look at you. They are ashamed of themselves. They think they are failures, a waste of flesh, better off dead. They think and some people have them believe they are a burden to society. They think they should just stop looking after themselves, knowing they are dying first in spirit, and then in body.
I have counselled those who considered committing suicide. I spent an entire night counselling a dear friend with advanced cerebral palsy. He felt like a beggar selling his book of prose on the street about the struggles he has had in his life. He had a plan of how he was going to commit suicide. He was going to place a wooden board on the balcony strong enough to support the weight of his powerchair. He would then drive it on that board right over the balcony ten floors to his death. When morning came he felt there was a reason to live. What about those who don’t have the support network they need to see the truth that their life has a purpose? Where do they go for help? Who is there for them?
Please help those with chronic and rare diseases. Many have to play a game of Russian roulette every month of what medications they can afford, and those they will have to do without. While I greatly respect the tough work that the Exceptional Access Committee of the Ontario Ministry of Health has to do in ensuring the safety of medications it approves, there are many medications I need to treat a rare autoimmune disease called mastocytosis that isn’t covered. Basically, this disease diagnosed through a punch biopsy of a skin lesion in 2014 causes me to have an overactive immune system. I have way too many mast (immune and systemic) cells that attack one another. I have been intubated 10 times for mast (immune and systemic) cell attacks that have gone anaphylactic. When I have an attack these mast cells increase in number. They have an irregular shape. The body regards these mast cells as foreign invaders to be destroyed, like the evil villain Darth Vader in the movie Star Wars. I have to take mast cell stabilizers, antihistamines, and immune system boosters to stay alive. The only cure for this terrible disease is to kill all the stem cells in my bone marrow and replace them with healthy ones. According to a former doctor of mine, the survival rate is 25% for this procedure. It’s only done in cases where there would be imminent death. We are so thankful I’m not there yet.
All over the counter medications prescribed by a doctor or specialist for the health of their patients who otherwise couldn’t afford them should be covered. The cost of all prescription medications prescribed by a doctor or specialist should be covered. If you don’t make these vital investments in people’s health healthcare costs will spiral because people will get sicker.
No one should lose their home because they can’t afford their medications. No one should die before their time because they can’t afford the medications they need. Everyone has a fundamental human right to have the best kind of life possible, to live as long as they can, to have the health to support themselves and their families.
We have to pay several hundred dollars every month for the medications I need that aren’t covered. We have a shortfall of approximately $700 in our monthly budget. There are months when we need more medications because the mastocytosis is flaring, In those months we can have over a $1,000 budget shortfall. There have been months I have gone without critical medications such as Singulair for asthma, and to reduce allergic reactions from the mastocytosis.
I have to cope with agonizing pain every single day from the inflammatory process mastocytosis causes throughout my body as mast cells dump their toxic contents throughout it. I submit the time we couldn’t afford the Singulair my breathing worsened to the point I ended up as an admitted patient in various northern Ontario hospitals for seven weeks at a cost to the taxpayer of approximately $42,000. A clinical nurse coordinator at a hospital said my bed was costing $1,000 per day. Singulair costs about $85 per month. Specialists can’t get it covered for their patients. I have shown through pulmonary function testing that my breathing greatly improves on Singulair.
I am experiencing one allergist/immunologist after the other saying they do not want to take my case. One of them said, “Your form of mastocytosis scares me.” He was referring to how I have negative serum tryptase mastocytosis. Essentially, I have low to moderate level reactions for several days to weeks that cause me things like gnawing sharp abdominal pain, itching, difficulty breathing, raised heart rate and blood pressure, and to have fluid retention so bad that I have pitting edema. It appears the only option is to go to the Mayo Clinic in Rochester Minnesota for treatment. We can’t afford what it would cost for me to go there. It should not be this hard to get the help I need.
If I am not given all the medical treatment I need, this disease will get worse, and I will most likely have a shorter life. We are thankful on treatment, I have had a time of much-improved health. Unfortunately, the mast cell attacks are becoming much more frequent and severe. This struggle of over 16 years to get the medications, vocational, educational and occupational supports I need has greatly worn us down. I do not say these things to be pitied. I share my story because it is only one of many that need to be told. I hope it encourages many others to come forward with their story. Today doesn’t say what will happen tomorrow. With the right treatments, I believe there is realistic hope I will get much better. There are newly developed immunocological medications for the treatment of mastocytosis.
Letters I have sent to the Ontario Ministry of Health and Long-Term Care come back with answers about the coverage of medications we already knew. I have had several medications denied for coverage from the Ontario Exceptional Access Committee.
I want to hold my beautiful wife, Karen, in my arms and tell her how much I love her, for as long as I can. I desire to be able to have the health to be able to work, study and get my Ph.D. in CounseIling and Th.D., to be a psychotherapist, professor, and chaplain. Karen and I want to help in the inner healing of others from mental health issues, marital problems, the damage of abuse and PTSD. I long for us to stop living in a constant state of hyper-vigilance concerning my health with triggers such as certain foods, perfume, cologne, chemicals, and cigarette smoke, which have caused me to have multiple mast cell attacks, which have gone anaphylactic. I want my wife to stop worrying if this mast cell attack will cause more permanent neurological and/or organ damage from oxygen deprivation, or my death. I can’t get the cost of oxygen covered. I don’t meet the provincial standards to receive it, even though when paramedics have given it to me, my condition improves. In many instances, I can be released from the hospital within hours. If I could get on top of the mast cell attack with oxygen in its early stage, I would most likely not have to go to the hospital for treatment. This would save taxpayer dollars. After every mast cell attack, there are deficits in speech, memory, mobility, and energy that aren’t coming back.
I leave you with this thought from Jiddu Krishnamurti, who was a philosopher, speaker, and writer. “It is no measure of health to be well adjusted to a profoundly sick society.”
If you want to set up a meeting to further discuss the points I have raised, I can be reached at email@example.com.
Dr. Kevin James Osborne B.A., B.Th., M.A., Psy.D., D.Sc., D.D.
Dr. Kevin James Osborne, Psy D., D.Sc., D.D., is the Vice-President of Institutional and Mission Development for St. James the Elder University. He feels God is leading him to graduate study in theology and counseling. Karen is a counsellor. She is also a Master to Doctoral student in Psychology at SJEU. Our mission field is wherever God puts us for His glory.
Posted on May 31, 2018, in On Circumstances and tagged 2018 Ontario provincial election, chronic disease, healthcare, Hope, life, mastocytosis, Mayo Clinic, medications, mind's seat, N.D.P. Leader Andrea Horwath, Ontario, P.C. Leader Doug Ford, Politics, Premier Kathleen Wynne, rare disease. Bookmark the permalink. Leave a comment.