The cure?


(SuperSam101) #1

I’ve already addressed this issue in the past. However, it was in a short post and in very little depth. The question was “when will we get the cure”. Answers were estimated at around ten years,but what if that’s what they said 10, 20 or 30 years ago. The other thing is (and it needs to be brought to attention) that my country might take a long time to receive the cure. Since obviously it’s not going to be a groundbreaking discovery to the general public. My country is probably gonna take about another ten years to catch up. What if I want the cure but can’t access it? Then I have to either fly to Europe or Australia etc to receive the cure and return, but would there be any point in going back to a country that neglects it’s people so much. On top of that my medical aid probably wouldn’t even pay for the cure. I only recently thought on this, but it is terrifying for me to do so. Since I don’t really know if even when there is a cure, it will be available for me.


(Bill) #2

I applaud you for asking this question in the way you did! Bravo! The questions you have raised are things that you (we?) can work on.

Where do you live? That might help us better appreciate the challenges you face. The challenges are a little different in each country around the world.

Later today I will post one of my long-winded stories. It is a story of how a small group of people changed the way disability services were provided in their state here in the U.S.A. I hope it gives you something to think about, and, perhaps a direction for you to invest that tremendous passion and energy you have.

I will also note how many countries deal with Type 2 diabetes in a more functional (and cost-effective) method than we do here in the U.S. That story will get “very close to home” for me - it involves my son-in-law. Why are some countries better at dealing with Type 2 than the U.S.? Or, and it’s a big “OR,” does that question really matter? It may not - I’ll explain later.

Yours is a great question! I appreciate how you presented it!

Until later…

Bill


(Spring) #3

I do not know how health care systems work in other countries, but my sister’s husband is from France and their family has spent time visiting family there, lived there for three years and have visited many other countries and she has told me the health systems there are much better than ours and love them.


(Bill) #4

@supersam101 , I said that I would respond later today; it is now “later.”

Here is the first story I want to share with you. We might call this, “Why doesn’t everyone have access?”

Some years ago I went to a family gathering where I saw a family member I had not seen in many months. (The last time I had seen him he had been very overweight; he was overweight because of his preferred diet and a lack of routine exercise.) When he arrived at the family gathering he looked very thin. Everyone carried on about his weight loss and he responded, “I can eat anything I want and I don’t gain weight.” I was suspicious. Later when we finally had a chance to shake hands I could smell ketones on his breath. I knew right then that he had diabetes.

Over the next several months things got worse; he went to see his physician. This began a series of referrals from one endocrinologist to another. He began to gain weight, lots of it! He told me during one visit that he took 18 pills every morning, including medications for Type 2 diabetes and high blood pressure. He said, “I just hate this and the doctors just keep giving me more pills.”

More time passed and this family member became morbidly obese. Finally, his company made an appointment for him to have a “total physical” done at a renowned health care center here in the U.S. During the physical it was suggested he consider a “stomach reduction procedure.” His surgeon explained that the proposed procedure was the “treatment of choice” in many European countries when people develop Type 2 diabetes.

He had the procedure done. In a few months his weight hit a “normal” level for a man his height. His blood pressure returned to “normal.” He was no longer having to take medications except for a multi-vitamin.

You might ask, “Why did his previous physicians fail to offer him this ‘cure’?” Why did they “make him miserable with medications” and fail to ease his symptoms? I don’t have an answer for you.

The next obvious question is, “Will a stomach reduction procedure work that well for everyone who has Type 2?” The answer is, “No.” Not everyone will experience this level of “recovery.” But most do experience some relief from their Type 2 symptoms.

Here’s the point, the country where you are, whether it is the U.S.A., France, or Greece, does not “always” have the “best” method for treating a specific syndrome. So it is important to keep asking questions, and keep seeking information. If you look hard enough, and if scientific data support an alternative treatment, it may be reasonable to consider it. But proceed cautiously; some procedures can’t be undone.

Now, to @supersam101 's question - what if your “coverage” won’t pay for it? Or if it isn’t available in your country, should you emigrate to get it? That’s a personal decision. But I will admit that my wife would gladly leave the U.S. if a true “cure” for diabetes was available elsewhere in the world. When it is “just” an issue of payment for treatment, there is always a way to get it if it is a “prudent investment.”

That brings me to my next story. We might call this one, “Where there’s a will, there’s a way.”

I want to introduce you to Terry Winkler, M.D. Dr. Winkler was a physiatrist and colleague of mine at the Missouri Rehabilitation Center in Mt. Vernon, Missouri.

As I was making sure I had my facts right for this story I discovered that Dr. Winkler died a few years ago (2014). But I came across this video that he had recorded with his pastor in 2013, just a few months before Dr. WInkler’s death. I’ll leave you with the video. Tomorrow I hope to post more detail of this remarkable man’s life, and I’ll clarify how Dr. WInkler’s life relates to @supersam101 's questions.

By the way, Dr. Winkler was a very religious man. That is evident in the video. I’m not advocating that everyone “get religion” - if that’s your thing, that’s fine with me. By linking to this video I want to present the portrait of a man who found a way to deal with adversity. I’ll fill in the rest of the story tomorrow.

Cheers!

Bill


(SuperSam101) #5

@BillHavins thank you for the stories, but I won’t share my exact country but rather the continent. I’m a European German origin. However, I live in Africa and they’re not really… well the most popular or economically powerful part of the world. It also does not help having a corrupt president. I think i might have a big problem getting the cure here, but if it does get here. There are so little people with type one, that I assume there would be a line of about 12 people at my local hospital. (unless it’s not a surgical thing and rather a tablet or pill)


(Bill) #6

I want to continue my story about Dr. Winkler, or “Where there’s a will, there’s a way.”

Back in the 1990’s I was sitting in a staffing room with Dr. Winkler. We had just met and were waiting for the rest of the rehabilitation team to arrive so we could review the progress of the many patients on the unit. As we chatted, we began to talk about patient advocacy. Dr. Winkler told me he had had a “run-in” with President Bill Clinton. I asked him to tell me the story. This is what I remember of what he said.

It seems that in 1991, when Bill Clinton was the Governor of Arkansas, the Arkansas legislature decided to cut Medicaid spending. One of the items that was on the “chopping block” was funding for personal care aides for people who were paralyzed as the result of spinal cord injuries. The major issue for these people was this - loss of personal care aides meant that many would have to move out of their homes and into nursing homes to receive the daily care they needed. That’s right, out of their homes and into nursing homes. If they owned, or were buying their homes, those homes would have to be sold to pay for their nursing home care. (The term that applies here is “spend down.”)

At the time these Medicaid cuts were proposed, Dr. Winkler was the head of an Arkansas advocacy group for people with spinal cord injuries (ADAPT – American Disabled for Attendant Programs Today). During the weeks that the Medicaid cuts were debated Dr. Winkler attempted to schedule a meeting with, then, Governor Clinton. He said that he wanted to talk to the governor to let him know the “true economics” of the proposed cuts and the damage the cuts would cause in the lives of people who had spinal cord injuries.

Dr. Winkler was told a meeting could not be arranged. He persisted for several weeks, but no meeting was ever scheduled by the governor’s office. The Medicaid cuts were eventually adopted by the legislature and were planned to go into effect on January 1, 1992.

Dr. Winkler told me that he just could not let the Medicaid cuts go into effect without affected people having the opportunity to “plead their case.” He talked with other members of ADAPT, and, on December 30, while the governor was out of the state, Dr. Winkler and several ADAPT members made their way to the governor’s office in the capital building. Once there, they chained themselves to the governor’s desk, exposed utility pipes, and other immovable objects. He stated that they were prepared to stay there “indefinitely,” and until their concerns were heard by the governor.

I asked Dr. Winkler why he chose to chain himself to the governor’s desk. If I am remembering this correctly, he told me that he had had to live in a nursing home for quite some time after he experienced his spinal cord injury. As a young man he found that experience unbearable. He stated that he did not want peoples’ lives ruined just so the legislature could boast they had made Medicaid cuts. He explained that it would be much less expensive to continue personal care services for spinal cord-injured people in their homes; he noted Medicaid spending costs, in “real dollars,” would increase appreciably if spinal cord-injured people were made to leave their homes to receive care in nursing homes. He also noted the emotional toll the Medicaid cuts would take. He expressed concern that the governor had never heard this information. He stated that he felt a need to be heard and to deliver this message. He stated he felt he had no other choice than to engage in this “protest.”

Soon after the governor’s staff became aware of Dr. Winkler’s “protest action” the state police were called. Dr. Winkler told the officers that the group planned to stay chained in place “indefinitely,” and until they were heard by the governor. A “standoff” of sorts ensued for hours.

Late in the afternoon Governor Clinton called his office and spoke to Dr. Winkler and the other ADAPT members over a speakerphone. Governor Clinton is said to have asked, “What will it take to get you out of my office?” Dr. Winkler said he replied, “Give these people back their personal care aides.” Governor Clinton eventually agreed to restore funding for the aides. Dr. Winkler and his group unlocked their chains and left the governor’s office.

You might ask, “How does this story relate to @supersam101’s questions? And this Dr. Winkler, he wasn’t on Medicaid, was he? Why did he care about these cuts?”

I hope you can answer these questions for yourself. I need to stop writing for this evening. I’ll try to finish my part of this story tomorrow.

Bill


(Bill) #7

It’s time to finish my story about Dr. Winkler.

To answer the questions in the post above, no, Dr. Winkler was not on Medicaid. At the time he chained himself to Governor Clinton’s desk he was a practicing physician. Despite his severe disability (his spinal cord injury) Medicaid was not a concern in his personal life. But Medicaid had been a concern for him in those months after his spinal cord injury.

In his professional life as a physician, and in his life as a “member” of that group of people who have spinal cord injuries, Medicaid was a very, very big deal. The proposed Medicaid cuts were a big deal because of the toll they would take on his patients and the toll they would take on other members of the community of persons with spinal cord injuries. Dr. Winkler knew the extent of those “tolls” better than anyone in the State of Arkansas. He had experienced them personally and saw them in his practice every day. If he could do anything about it, those Medicaid cuts were not going to go into effect. And they didn’t.

So, what does Dr. Winkler’s story have to do with @supersam101 ‘s concerns about a cure for diabetes? Let’s go back to Dr. Winkler’s story and I’ll explain. But here’s a hint – it’s in the similarities between his and our situations.

In June of 1995 Christopher Reeve, an actor who had just played Superman in a popular movie, fractured his spine when he was thrown from a horse. He was paralyzed from the neck down. He was placed on a ventilator.

In the aftermath of this accident the Reeve family began to push for increased research into spinal cord injuries. They invested their own money and started a foundation to fund promising research. Christopher Reeve became the “face” of the “push” for a spinal cord injuries “cure.”

In the late 1990’s and early 2000’s some promising findings were reported by research institutions including the University of Miami. It seems hope was growing that spinal cord injuries could be “bridged” by promoting growth of neurons across the “gap” left in the spinal cord by the injuries. In 2000 I went to a conference in San Diego where presenters shared their latest findings. I left the conference thinking, “Well, maybe someday, but not anytime soon.” At least my wife had fun at the San Diego Zoo while I was at the conference.

Christopher Reeve died in 2004. His foundation’s research continues. But what about Dr. Winkler?

Dr. Winkler and I worked with patients and families who had experienced devastating medical difficulties. Those conditions included head injuries, spinal cord injuries, strokes, progressive neurological disorders, amputations, ventilator dependence, and conditions that led to persistent vegetative states. In our interactions with patients and families we were often asked, “Can this be ‘fixed?’” The other version of this question was, “Are ‘they’ working on a cure?” This latter version of the question was often asked months after the original diagnosis/injury.

In my interactions with Dr. Winkler I discovered that he and I shared a very similar philosophy for dealing with medical challenges – “Deal with what’s in front of you, keep an eye on the future, but don’t let it distract you from the work at hand.” I would often share this message with the families of my patients. Those who grasped the meaning of the message were quicker to adapt to their family members’ new medical needs.

Some families were never able to grasp the meaning of this message; they continued to hope for “a cure,” “divine intervention,” or some other “reversal” of the injury/illness. I will never forget the referral I took from a physician who had patients on the hospital’s “ventilator dependent” unit. There was a young man there who was in a “persistent vegetative state” after experiencing a head injury in a motor vehicle accident. He had been in that condition for six years. The physician asked me to visit with the young man’s mother; the physician said, “He’s brain dead. It’s time for her to let him go. This is inhumane.”

When I entered the room I introduced myself to the patient’s mother. I told her I had read her son’s chart. I asked her to tell me about her son. Her conversation quickly went to how she had bought her son a “muscle car” for his sixteenth birthday; his head injury occurred the first day he had the car. He lost control of the car and ran into a tree. She told me, “But he’s going to wake up. I just know it!”

Over a period of several weeks I continued to visit with the patient’s mother. Her routine was the same every day. She would arrive at the hospital at about 8:30 in the morning. She would help to bathe her son and change the linens on his bed. Then she’d read the newspaper to him (she said he loved sports) and would then turn on the television. She’d doze in a chair by the side of his bed until about noon, would go to the cafeteria for lunch, and would then return to the room for another couple of hours. About 3:30 each afternoon she’d gather her things and head to the parking lot. She’d then drive to her home some eighty miles away, take a shower, and go to her workplace where she worked an overnight shift. She’d be back at the hospital the next morning. She had followed this routine for six years.

One Wednesday I entered the young man’s room; I had scheduled an appointment to visit with his mother. We talked about the latest brain scan that had been done (the one that demonstrated the young man was “brain dead”). I asked her, “When will it be time to let your son go?” She began to cry. She eventually said, “If he dies I killed him. I bought him that car. If he dies I killed him!” She then looked up and said, “Don’t come back! I don’t want to talk to you anymore!” The woman’s guilt made it impossible for her to deal with the reality of her son’s medical status.

The situation then got worse. As is often the case with patients in vegetative states, this young man required emergency surgery of his gut; he was transferred to an acute care hospital for treatment. A regulatory change prevented his return to our facility and he was discharged from the acute care hospital to a nursing home. He quickly died.

Rather than allowing herself opportunity to find a way to deal with her guilt, and rather than allowing her son to have the dignity of dying in a facility where he had received kind and exceptional care, his mother chose to “roll the dice” in a gamble that he would miraculously awaken. Instead, a regulatory change caused him to die in a nursing home while she was at work.

There are some medical conditions that “are bigger than we are.” In the case of a persistent vegetative state there is little hope of functional life, so there is little to do but plan “death with dignity.” (There is a “standard” for diagnosis of a “persistent vegetative state” and when an individual’s status meets the criteria for that diagnosis there is no hope for recovery, despite what sometimes appears in the lay press.)

But in the case of spinal cord injury, and diabetes, there is hope of “making a life.” I believe Dr. Winkler and I did just that by following our simple philosophy – “Deal with what’s in front of you, keep an eye on the future, but don’t let it distract you from the work at hand.” As far as T1 is concerned, that means manage diet, test blood glucose levels regularly, manage insulin basals and boluses, document regularly, and get regular exercise. It also means stay abreast of research so you’ll be aware of treatment trends, and treatments that demonstrate irrefutable evidence of promise.

This simple philosophy means doing the same thing you’re doing now – participate in patient advocacy groups. There are many, many people in Arkansas who owe Dr. Winkler quite a debt because of his selflessness on behalf of spinal cord-injured patients. JDRF serves a similar role for us.

If we deal with what’s in front of us, keep an eye on the future, but don’t let it distract us from the work at hand, we’ll make pretty good lives for ourselves, just like Dr. Winkler did. And if a “real cure” comes along we’ll still be in good shape when they give it to us.

Hope this helps a bit.

Bill