This is an update three years later from the time this article was written.
I offer this piece in the hope it will continue the discussion towards the formulation of a national healthcare strategy that allows for the medication costs to be covered for those with rare, chronic diseases, and those who otherwise couldn’t afford them. Something is wrong with a system where a woman doesn’t take her heart medication and has a serious heart attack. She stopped taking this life-saving medication because she couldn’t afford it. Her story was recently shown on CTV news. I am not surprised that one and five Canadians don’t take their medications because they can’t afford them. I have often been one of them. If it wasn’t for the help I receive for the costs of medications from caring friends, I would have died many years ago from having an extremely rare autoimmune disease called mastocytosis. I receive compassionate coverage from a drug manufacturer for the cost of the mast (immune and systemic) cell stabilizer ketotifen fumerate (generic name Zaditen), which is over $500 each month. Without it I will die from a process of the mast cells continuing to increase in number until I would go into a coma, and then death. In spite of the many challenges of dealing with this terrible disease, I have achieved the following degrees in the last four years from St. James the Elder University: B.A summa cum laude in Clinical Counselling, M.A. magna cum laude in Clinical Counselling, and my Doctorate in Psychology (Psy.D.)summa cum laude. I am thankful for all the people who have walked with me and helped my wife, Karen and me, with their prayers, support, and encouragement. We are so richly blessed to know you all. I still haven’t convinced our kitties, William a.k.a. Sir Lounge a Lot and Catherine a.k.a. Her Royal Highness Princess Catherine of Matheson that I’m not a certified kitty psychologist. My sessions with them begin about 7:15 a.m. Yes, even kitties have stress, but they sleep about 17 hours a day. Some days I would like to trade places with them. Wouldn’t you?
I hope the sharing of my story encourages those who struggle to have their voices heard to speak up about what they would like to change in the healthcare system.
As I am loaded on to the air ambulance Feb.7th 2015 that will transport me from Englehart Hospital to the Timmins & District Hospital intensive care unit after a life-threatening allergy attack, scenes from my life of over 13 years of trying to get the government and medical system to understand the help I need loom in my mind like a surreal nightmare. I think of how but for caring friends supporting the costs of my medical treatments, I would have died many years ago.
I relive the sadness that my wife and I have not had the opportunity to celebrate our eighth wedding anniversary. I haven’t even had my birthday celebration. That is our life.
Tears come as I think of how if we had received the help we needed from the government, that perhaps I would not be struggling to keep alive in that air ambulance. Yet, I do understand they have an extremely difficult job in deciding what areas of government healthcare policy need to be reviewed and improved upon. I understand this reality because I have been a volunteer policy advisor for over nine years assisting a dedicated team in advancing disability rights.
I am alone when I give myself my first EPI pen shaking uncontrollably. My wife, Karen, is away because of severe caregiver burnout. The cost of her to stay at a local motel is provided through a loving Christian brother.
I had reached out for help so many times with political officials to either get no response or one that I was already aware of. I am expected to understand. I am told by the Exceptional Access Committee of the Ontario Ministry of Health and Long-term Care that a number of my medications have not gone through a federal government peer review process. Drug manufacturers aren’t likely to do this because it costs millions of dollars.
All I see is the tears in my darling’s eyes. All I feel is this crushing sadness. I see no hope. Maybe, that will come tomorrow. My logic and extensive training in policy development and social service work says positive change takes time and patience. I respect that the Exceptional Access Committee is charged with the onerous responsibility of ensuring that all medications go through a vetting process to determine their safety for the public. In my case, though, all my medications have not been harmful to my health. I respectfully suggest the process of reviewing medications people apply for coverage for needs to be re-examined and changed. People needing these medications who otherwise couldn’t afford them shouldn’t be going through rejection upon rejection of their applications for help. These people need to have their hope for a brighter tomorrow restored with much less suffering and uncertainty about their health.
Injustice anywhere is a threat to justice everywhere.” – Rev. Dr. Martin Luther King Jr. In a rare departure for me, I am going to address a personal situation of injustice I am experiencing. I am doing so because I feel that if I am to encourage and even challenge you how we can build better communities and a better world, I have to first have the courage to look within myself. I need to do all I can to address injustice wherever I see it. This is why I chose a quote from Rev. Dr. Martin Luther King Jr. He had the courage to speak out against racial injustice and inequality. He was willing to go to jail, have his reputation attacked and die for his beliefs. I hope my life shows that same kind of consistent commitment to what I believe is right and wrong in our society.
When I look into Karen’s eyes at times I see deep soul-penetrating heartache. This journey of over 12 years advocating for the care I need has worn her down.I long for the time when I will see her eyes light up with joy, and a zest for life again.
Where is the logic in not giving people the help they need? How is it beneficial to deny anyone the medications they need for their health, and in many cases to stay alive? This only adds to healthcare costs. We need to work together to develop a national healthcare strategy that benefits everyone, that gives them the medications and treatments they need for their health. This national policy should not deny people help for their healthcare costs simply because they can’t afford them. I share with you a personal experience about a medication I was denied help for.
Approximately three years ago I ended up at various hospitals for a combined total of six weeks from mast (immune & systemic) attacks, which were complicated by a combination of a bacterial and viral flu. At that time the government had stopped my coverage of Singulair, a medication used in the treatment of asthma. Their contention was that those who could use a spacer for their inhalers didn’t need Singulair, even though my lung function tests had proven my breathing improved on it. In one of my visits with my allergy specialist, I explained why we couldn’t afford the Singulair on the limited income of Ontario Disability. He looked horrified. He said, “Without the Singulair expect more of the same of these terrifying reactions.”
In my opinion, the denial of Singulair resulted in the Ontario taxpayer paying out approximately $42,000 for me to be hospitalized based on an average of $1,000 a day for six weeks of hospitalization. That was the figure given to me at the time by a nursing coordinator, who told me in no uncertain terms that in spite of the doctor in charge of my care saying I needed to be there, I was made to feel like I was one of those second-class people because I am on government disability. Why am I on it? Because the system that should have dug below the surface, should have not dismissed me as merely making up my illnesses, failed me. It broke down. It got it wrong. Before I was diagnosed with mastocytosis an internal medicine specialist scolded me saying, “Ninety-five percent of the doctors say you don’t have mastocytosis. We need to start taking medications away from you.” The more difficult journey has been one of forgiving those who judged me as being a malingerer making up my illnesses to get their attention. With all our advances in medicine, the one thing that hasn’t changed is the attitude of some medical professionals concerning those who haven’t yet had their disease diagnosed, and those who have, but they still doubt the severity of the disease. The belief of these doctors is that if the illness can’t be found it doesn’t exist. I am thankful for those doctors and specialists who believed there was something seriously wrong with me. It just hadn’t been discovered yet.
l have pneumonia, flu and am battling a sinus infection going into an intolerable fifth month, I have asthma and mast (immune & systemic) attack in my doctor’s office. I am kept in the hospital overnight for observation.
Last Friday, February 6th, I have a mast (immune & systemic) cell attack after an exposure to chemicals, and a man smoking a cigarette outside our local Valu Mart grocery store in Englehart. This is a small town which is about a two and a half hour drive north of North Bay, Ontario. I use several medications to avoid going to the Englehart ER.
Karen freezes whenever the paramedics arrive.With everything that keeps happening in our lives, we haven’t had the opportunity to celebrate our eighth wedding anniversary nor my birthday. I will fight this mast cell attack for almost 24 hours. I wake up at 5:00 a.m. Saturday, February 7th, with a lot of difficulty breathing. None of the antihistamines or inhalers I take stop the mast cell attack. More and more mast cells form. Karen calls it allergy on steroids. I tell people it’s a neighbourhood block party out of control. According to the website for the Mastocytosis Society of Canada, we all need mast cells to survive. They are in your tissues, organs and all throughout your body. They form part of your immune system. With a mast cell attack, it’s too much of a good thing as these mast cells become malformed. The toxic contents of these mast cells are released throughout the body, which can result in such things happening as anaphylactic shock, heart attack or stroke. Some people with more advanced mastocytosis develop cancers such as mast cell leukemia.
When none of the measures were working I was left with no choice but to take an EPI pen. I was all alone. My tongue had become swollen. I was going into involuntary shaking. My throat was closing up. I was suffocating. For those with anaphylaxis minutes and sometimes seconds can mean the difference between life and death.
I am thankful for the tremendous effort put in by the paramedics, Englehart ER team, and the Timmins General Hospital critical care unit to save my life. A second EPI pen is required. I am airlifted to Timmins & District Hospital for closer monitoring and treatment. An I.C.U. doctor tells me I came close to requiring intubation. That would have been my ninth intubation. The I.C.U. doctor said, “Mr. Osborne, you were very lucky. You came close to us having to intubate you.” While I understand why the doctor said this, luck had nothing to do with it. God is just not finished with me yet.
I reflect on what I said to the ER doctor as it became more difficult to breathe. “I am a brave man but I’m really scared.” He allowed me to hold his hand. He joked with me to put my mind at ease. He said he was going to do everything he could to help. He was one of those many unsung heroes. Everyone on the Englehart ER team and Timmins Hospital I.C.U. personnel are heroes —ordinary people doing an ordinary thing in an extraordinary way.
Please take away this thought from Rev. Dr. Martin Luther King Jr. “Injustice anywhere is a threat to justice everywhere.”
I think if Rev. Dr. Martin Luther King Jr. was alive today he would see in many ways we have become a more just society. But I also think there would be something else he would say. We become responsible collectively as a society when we as individuals stay silent about the things that matter.
When I was focusing on remaining calm in the air ambulance as I had to work hard to breathe, I listened to some relaxing music on my CD player. I don’t remember the songs I played, but they put me more at peace. The doctor riding along with me in the air ambulance teased me about how I had come prepared.
We never know what will happen to us. The crucial thing is to never stop hoping. Never stop believing that beyond the darkness of your today there is a brighter tomorrow. When you stop hoping there is no light at the end of that long dark tunnel of despair. Thoughts of being in Karen’s arms, caressing and holding her tight made me not give up. Karen is one of God’s many gifts to me I thank Him for every day. Thoughts of the many people who love me kept me going, kept me believing that I would get better. I did because of the exceptional care received at Englehart Hospital and Timmins & District Hospital.
It’s often thought that hope requires someone to do something huge to change a person’s situation. Hope often comes in small ways. It can be as little as that smiling nurse who greets you as you arrive in I.C.U. making sure you have clean pajamas and a comfy bed.
These acts of love help us reach beyond the rough times we go through. You can feel really sick and still see as I did, that life is a precious gift to be valued and shared with others.
You can learn a lot about life in an air ambulance.
Kevin Osborne, B.Th. with honours, D.D., D. Sc., Diplomate in Creative Ministry, is training to be a Christian psychotherapist through St. James the Elder Theological Seminary. He will be a Master of Divinity student at Trinity College in the University of Toronto. He will soon be opening a Christian counselling practice called You Can Hope Again with his wife, Karen, who is an M. Div. student at Trinity College. He is a member of The Word Guild, a Christian writer’s group in Canada. We are available to go where God sends us to do His will preaching, teaching, singing, giving marriage enrichment seminars or however needed. You can reach me at my email address email@example.com
May the Lord pour His richest blessings into every area of your life!