A leader, not a politician

How doing volunteer work in health care advocacy has prepared me for service as your Canyon County Commissioner.

After nearly losing our daughter to a “mysterious set of rare illnesses”  and through my background training in the veterinary field and microbiology our daughter was finally diagnosed. I knew with my background if she had to suffer for many years before getting diagnosed, that parents with no background, likely had no idea where to turn.  I started a non profit, to aide others who may be walking in our shoes. I spent hours on the phone with parents of children suffering debilitating issues. I watched as children got diagnosis too late, and parents called to grieve the loss of their child. I found legal support for parents whos children were threatened by Child Services for following their physician orders (because the state had no policy for treatment due to no ICD codes available) . I was there for dads who had enough money to either save a wife or save a child, but not both. I was there when dads left because they “didn’t sign up for this”.  I prayed, I listened,  I shared and God through me gave them hope and light and direction.

As time went on, I realized the diseases were not as rare as the doctors had us believe, only the diagnosis for the disease was rare. I determined I needed to understand what was really happening. Politically, and scientifically.  I grew the patient advocacy group to a research and patient advocacy group. We launched studies in partnership with several universities, defining the study and working with some of the leading physicians in the field. I became a founding member of the international scientific group. I couldn’t do everything, so I delegated.  I created and defined what our local support groups criteria would be.  I  identified nurses and recovered patients who I asked to start official support groups around the State.  As we developed scientific and medical advances, our support groups got the information first.

 

Because there were no doctors in Oregon who were trained to treat, we began a physician training and mentorship program with the international group and started training MDs and Naturopaths to handle the ever increasing case loads.

Through surveys we identified issues with diagnosis and within 5 years we were able to raise enough awareness and train enough physicians that the patients went from an average  from onset to diagnosis of  16 years to an average onset to diagnosis in 6 years and then 2 years later our average onset to diagnosis dropped to 2 years.

In 2012 I created legislation,and created a patient testimony panel to speak to our legislators about the challenges they faced, medical, physical and emotion at the hands of our state policy.  Patients were

government advocacy

still having trouble with diagnosis and physicians were not getting reimbursed by insurance. We created both legislation and a Senate task force to work with the Oregon Health Authority to change policy in Oregon.   However, that was stalled out due to political objection , despite our international group creating evidence based guidelines for dignosis and treatment and had been accepted by both the  Institute of Medicine (IOM)  and The Agency for Healthcare Research and Quality’s (AHRQ) .

By 2017 we were told by our senators nothing more could be done.  I said they weren’t thinking outside the box.  I reached out to a friend with the HHS and God connected me with a wonderful patient advocate who had worked in Africa on human right to medical care (for AIDS) .  Together and with a few others across the world, we created an AdHoc committee.

The AdHoc committee developed a dossier , which we published and submitted in March of 2018 ,  to the only place where ICD policy could be changed in medicine.  Expecting a two or three year wait for acceptance and the ability to speak truth to power, we were surprise when our group was asked to come testify at the UN Special Rapporteurs in June of that year.

Leadership Canyon County Pictured at the right:   International AdHoc Committee – represented US (Theresa Denham, pictured middle) , Turkey, Netherlands, Italy, France, Canada, Brazil, England

World health leaders including those from CDC and NIH came to debate our evidence and challenge our request for policy change and after days of meetings three of the special rapporteurs determined that our case was solid and referred us to Dr Tedros, leader at W.H.O. where we were able to negotiate 400% new ICD codes for serious, debilitating and deadly tick born diseases.

The challenges we faced included multi national barriers, both in policy and in language, they included working across the table with hostile recipients, negotiation skills, learning international etiquette, and bridging communication gaps.    All these skills, and Gods grace allowed us successful outcomes.

All of us were volunteers on our own dimes. We did this for the communities in which we lived and for children, adults and families who were unable to get care. This is the crux of what a commissioner does– and the emphasis should be to serve the communities which they are blessed to be part of. nothing more, nothing less.

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