The US Healthcare System in its Current Form is the Greatest Violator of Human Rights of the 21st Century

The Insurance Industry has been successful in defining those that struggle with disease as the drain on society instead of a Healthcare System that is design to exploit our loss.  Our Healthcare System is destroying families medically and financially.  My family and the millions of other families who struggle with disease greatest losses have NOT been from disease but, from a Healthcare System driven by GREED – a system that treats human life as nothing more than a commodity to be bought and sold on our US Healthcare free market. 

While our family’s stories are tragic they should be criminal in the US - the wealthiest most educated country in the world where human life is valued for only those that can write the biggest check.  As a mother I have a story to share of the tremendous losses caused by our US Healthcare System but, I will not be heard on my own. 

The Wilmington Yes We Can Healthcare Reform Team and the Obama Transition Team are giving us our voice back.  While Healthcare is not a Democrat or Republican issue it is a Human Race issue – President Obama’s personal family story and his mother’s battle with cancer and insurance companies gives us HOPE that his life experience will give our families a voice in healthcare reform. I am so inspired by President elect Obama’s and Sen. Ted Kennedy’s commitment to Healthcare Reform – I feel confident that a Non-Discriminate Healthcare System Powered by Science with Equal Access for All is a real possibility. 

Please join our team in appealing to our government to demand a Healthcare based on the probability of disease and the possibilities of science.  We will be an unyielding force to demand a healthcare system that is driven by need NOT greed.  Health and wellbeing are at the core of our individual & collective wealth; health affects our ability to perform in the workforce as well as our children’s performance in school.  Our reality is that disease can and does cross all boundaries of society and our non-discriminate solution is science. 

Families with high medical liabilities like mine lose our jobs, our savings, we are forced onto government programs where access to care is so controlled that their only destiny is premature death.Fact:  Healthcare is our Right & Responsibility!  Disease/Disability crosses all boundaries of society therefore, our solution is a healthcare system designed to prevent and defeat disease with access for all.  The question that was ask during presidential debates: “Is Healthcare a Right or a Responsibility?”  My life experience as well as my read on the constitution is that it is both – It starts with Our Right but requires Our Responsibility at all levels in order to create our Win-Win of a Healthy Productive Society with the ability to defeat disease while controlling and reducing healthcare cost.

A Story of Betrayal by Our Government & Our US Healthcare System:
My family’s healthcare and economic crisis which is similar to millions of American Families have left me with this sense of betrayal and hopelessness.  I feel so betrayed by my government because our reality is that instead of serving and protecting the people they are serving and protecting the predators exploiting our vulnerabilities. 

Our economic and healthcare crisis can be linked back to legislation driven by greed that deprives us all of our constitutional rights of life, liberty, sovereignty and prosperity. Discriminate job and healthcare loss – Professionally I was in the top 4% of performers for years but, because of my family’s high medical liabilities of my husband is a Stage IV Kidney Cancer Survivor & my son has Terminal Genetic Disorder called Wolfram Syndrome caused me to miss a higher % of days than my colleagues. 

High medical liability employees drive up the cost of Healthcare Insurance for companies so when a national a lay-off was announced I knew I was at risk even though my performance throughout my 18 years was consistently high – I was laid-off in Jan 2008.  The US Public Programs of Medicare & Medicaid are programs designed to legally control access care to the human beings who are considered to be the least contributors and the drain on society.  The beauracy is so extreme and the reimbursement rates so low that it limits their access to medical care, medical devices, specialty care and medicines that they need to survive disease.

The documentation below is an attempt to describe my family’s challenges with Medicare in trying to gain approval for of insulin pump supplies the device that is my son’s lifeline. 

This is our first experience with Medicare my private insurance expired in September  my COBRA cost was $1850/month my unemployment was $1100/month – I will start with we are thankful to have coverage for Adam through Medicare the reality is he is uninsurable therefore, without it he would not have access to any care.

The Initial Medicare Denial Process has taken 3 months many hours & conversations with Medicare operators at all levels, Medtronic Medical Supplier, healthcare professionals, 4 trips to hospital and clinic labs; only to get a denial for a device that is Adam’s life line.  Wolfram Syndrome is a neuro degenerative diabetes not autoimmune – low blood sugars put him at risk of long lasting seizures. Wolfram Syndrome is a neuro degenerative disease causing neuropathy of all the tissues therefore all systems are involved.  The acronym for Wolfram Syndrome is DIDMOAD (Diabetes Insipidus, Diabetes Mellitus, Optical Atrophy & Deafness). 

The progression of Diabetes Insipidus of the Kidneys has left Adam with only 20% kidney function therefore, he is unable to tolerate long lasting insulin or large amounts of short acting insulin because it cannot be excreted and builds up putting him at increased risk of seizures.

I have spoken with no less that 12 Medicare operators 3 or 4 have read congressional legislations that stated that ALL Type I Diabetics were to have access to Insulin Pumps or if a Diabetic was using the insulin pump prior to becoming a Medicare participant – if that were the case my son has been a Type I Diabetic since the age of 7 he has been utilizing insulin pump since the age of 10 (he is now 21) because of seizures and his inability to handle long lasting insulin. 

The reality is that because we have a medical system that is designed to control access to care not disease congress passes legislation and then leave it up to private and public insurers to interpret how they will administer to maintain control of access & money. 

Medicare just like all administrators of policy start with following the law then applies their interpretation and manipulation of the laws.  “All Type 1 Diabetics should have access to insulin pump” ONLY if they meet these specific lab requirements 1)C-Peptide along with concurrent Fasting Glucose 2)ICA (Islet Cell Autoantibody) 3)GAD (Glutamic Acid Decarboxylase) 4)IAA (Insulin Auto Antibody) 5)IA-2(RIA).  Now all the lab ranges and requirements that Medicare have come up with will NOT change the fact that my son has been a Type 1 Diabetic since the age of 7, he has been on the insulin pump for 11 years due to seizures and lack of kidney function therefore, the pump is critical to control levels of insulin dispensed.  The longer they jockey around denying the device that is Adam’s lifeline they put his life at risk. Why? What is their Goal in Denial of Care? 

My family has been humbled by disease but not defeated we feel the same way about our healthcare system.  Adam is one of the most compliant patients he inspires all that come to know him by his spirit and courage to rise above whatever challenge or loss he is faced with.  I am sure that we will gain approval for his pump supplies eventually. Our experience and challenges with private & public healthcare system just reinforce my commitment to bring about change for all patients.  Our private & public healthcare system is fundamentally flawed in design it is designed to control access to care not disease. Within the public healthcare system denial of access to care is further compounded by the bureaucracy and low reimbursement. I have turned to the Patient Advocate Foundation – to assist us in 7 STEP Medicare Appeal Process we have reached out to friends and family to get supplies to hold us over until we get through this bureaucratic denial of care.  

The Wilmington Yes We Can Healthcare Reform Team is a network of about 140 members while they are not all on the Yes We Can Wilmington Portal – www.yeswecanwilmington.ning.com/  we will reach out to encourage full participation to keep our grassroots movement going.  The Wilmington Yes We Can Team will unite as an unyielding force to demand the creation and implementation of a Non-Discriminate Healthcare System Powered by Science that provides Affordable and Equal Access to Quality care for ALL. 

When we have completed our full proposal to submit to Obama Transition Team Jan 23, 2009 we will hand deliver it to Tom Daschle Transition Office, Sen. Ted Kennedy, Sen. Kay Hagan, Sen. Burr, and Rep. Michael McIntyre.  Our goal is to be very strategic and focused on how we can gain support for our Healthcare Reform. 

Our unapproachable public servants: When I went to Washington last Sept to deliver 537 letters of my plea for Healthcare Reform and my family’s story I was disappointed by difficulty in gaining access to our public servants – I learned a lot about the process and I will do things differently this time in order to gain support I will be strategic and focused on my approach.

If you or your coalition have any experience in advocating for Patient’s Rights or Healthcare Reform would you be willing to advise and support our cause of demanding a Non-Discriminate Healthcare System Powered by Science with Equal Access for All. A healthcare system that protects The Human Race's Right to Life, Liberty, Sovereignty and Prosperity. 

With warm regard,
Kay Zwan 
kzwan@att.net
“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.” Eleanor Roosevelt 

January 11, 2009
Good evening Wilmington Yes We Can Healthcare Reform Team;
I was inspired by the diversity, participation in our discussions; but, most of all I am encouraged by the tremendous knowledge and talent of our team.  Our team is representative of our goal to bring together all stake holders to tackle this “Daunting Overwhelming Thing Called Healthcare Reform”. The bureaucracy, fragmentation and silos of industry, government and healthcare community have contributed to our Healthcare Crisis.  Unity is critical to our ability to realize our common goal therefore, I thank all of you for your willingness to share your challenges and suggested solutions at all levels of H/C delivery.

I will document the stories of challenges and fears shared at our meeting within our final proposal to be sent to Obama-Biden Transition Team on January 23, 2009.  If you have specific stories / challenges that you would like included please feel free to submit to me by January 19th.

Agreed & Committed to:We agreed that by accepting “Our Seat at the Table on Healthcare Reform” we can create our Win-Win through a Non-Discriminate Healthcare System Powered by Science that is fundamentally built on basics of Our Constitutional Right to Life, Sovereignty and Prosperity. 

Our efforts and communication will start with our local Wilmington community citizens, legislators, role up to State and Federal.

Our Common Goal:  Get back to the basics of our Constitution: Protect the Human Race Constitutional Right to Life – through the development and implementation of a Non-Discriminate Healthcare System Powered by Science with Equal Access for ALL. 

Our Meetings & Grassroots Organization is one of unity in community with legislators, organizations, business and healthcare community to discuss the failures of our system and the solutions to empower our families and society as a whole with the ability to defeat and control disease while ensuring and protecting our individual right to life and our collective sovereignty & prosperity.

We defined our leadership roles and responsibilities of our team; as well as our proposed roles & responsibilities of all stake holders of healthcare utilization and delivery.

Overview of the Problem: Our Healthcare Crisis is at the Core of Individual & National Economic Implosion – Very Discriminate H/C System where Human Life is viewed as a commodity to be bought and sold on free market of H/C.  There were many stories of betrayal, fear of what the future holds for families finically and medically.

President Elect’s Healthcare Plan - Our Wilmington Yes We Can Team Ask (See Attachment from Obama Transition Team)Our portal of communication the web site http://www.yeswecanwilmington.ning.com/ a tab for Healthcare Reform maintained by Nancy Odonohue. A link for documentation and partnership coalitions.Suggested by Ron Miller a must see Frontline TR Reid “Sick Around the World” www.pbs.org/wgbh/pages/frontline/sickaroundtheworld

AttendeesLeadership Roles / ResponsibilityOrganization
Kay Zwan (Speaker)Moderator/Speaker Leader – Patient RightsObama-Biden Healthcare Reform Transition Team http://www.change.org/ National Patient Advocate Foundation http://www.npaf.org/
Adam Linker (Speaker)Leader – Healthcare AccessNorth Carolina Justice Center’s Health Access Coalition (Speaker) http://www.ncjustice.org/
Jason Rosin (Speaker) \ Cathy HowellLeader – Labor/Employer H/C PolicyEmployer(s) & Labor Union
Nancy Odonohue (Speaker)Leader - Technology – Empowering, Creating Efficiencies & Improving Communication H/CGoogle Personal Health Records www.google.com/health
Courtney Young Leader - CommunicationSame Sex Partners H/C Rights & Yes We Can Team Leader
William GrahamLeader - H/C Public PolicyHealthcare Public Policy
Scott Whisnant Leader – H/C Delivery Hospital/Provider - PerspectiveDirector Government Affairs New Hanover Health Network
Ron & Joan MillerLeader – Maintaining Obama-Biden Transition Team Strategy review Frontline “Sick Around the World” A Must See www.pbs.org/wgbh/pages/frontline/sickaroundtheworld. Concerned Citizens
Sandy Wang Leader –Education - is core empowering individuals & our community with ability to prevent and control disease. Educator – Community Education Programs - Concerned CitizenDan Trivelpiece / Gloria GartonNC Disability Center (Wilmington)NC Disability Center (Wilmington) – Concerned Citizens
Brenda Armstrong Wilmington ResidentConcerned Citizen
Mary Ramshorn Wilmington ResidentConcerned
Suzie Wilmington ResidentConcerned Citizen

Action items by January 19, 2009– our goal is to draw from the amazing talent of our team in order to not duplicate efforts and initiatives in tackling this “Daunting Thing called Healthcare Reform” you all have agreed to summarizing your areas of expertise as they apply to healthcare. I have attached the Obama-Biden Transition Project Participant Guide for Healthcare Community Discussions for reference.  I will follow that format to complete our full proposal that is to be submitted by Friday, January 23, 2009.

1) Adam Linker - Access – Could you please outline and describe your organization goals & initiatives to assist NC citizen’s access to affordable quality healthcare?  Can you please provide us with the NC stats, your coalitions proposed policies, (NC Health Access Coalition - initiatives sponsorship of SCHIPS).  We will work with Nancy on getting your coalitions newsletter and website on the http://www.yeswecanwilmington.ning.com/.  Do you all have letters created that we can store on yes we can web site so that our entire Yes We Can Community Network can access documents and communicate with our legislators?

2) Sandy Wang – Education: Could you please outline education and proposed local community projects as they apply to H/C and the creation of a healthier community.  Education is critical to controlling & preventing disease, outcome studies show that improved wellbeing increases productivity of our workforce and higher performing students.  The program that you are working on with Nancy sounds perfect in using technology and education to get kids involved excited in personal health.  Another suggestion could be partnering with Local & National Organizations to develop and implement local educational programs.  Addressing obesity through prevention and early intervention program of nutrition & physical education; pilot in 1 or 2 elementary schools (e.g. American Diabetes Assoc., Internal Medicine, New Hanover Medical Center, UNCW & Cape Fear Nursing Programs or Nutritionist)

3) Nancy Odonohue - Technology: is a critical component of Obama Healthcare Plan – the Google Personal Healthcare Records is a perfect fit to that strategy.  Technology is the solution to creating efficiencies, empowering patient with knowledge, improving communication between patient & healthcare professionals. Can you please outline the system and how it can be implemented in Wilmington for a pilot in 1-2 of our local elementary/middle schools or maybe the school where Joan Miller teaches?  http://www.yeswecanwilmington.ning.com/ is our communication portal - as we establish these alliances with coalitions like NC Justice Center Healthcare Access Coalition, National Patient Advocate Foundation, Common Good, Patients Above Profits we want to have links and to letter campaigns on our web can you help us facilitate these community actions?

4) Bill Graham – Healthcare Policy: You agreed to assist us in relationship building and policy design with our local & state legislators. Grant - funding to support for local and state programs of education, access & technology. An area that you want addressed locally/state policy is that of NC Mental Health Care disparities Medicaid, Medicare and Private.

5) Ron Miller – Comparing Plans Obama-Biden Healthcare Plan, “Critical Tom Daschle” & Review of Plans around the Word – suggesting a plan for Wilmington & NC that is in line with overall goal.   

6) Jason Rosin \ Cathy Howell – Employer & Labor Union: Can you provide me with your goals, challenges and initiatives as it pertains to employers H/C Reform?

7) Scott Whisnant – H/C Service and Delivery – Can you provide me with your goals, challenges and initiatives as it pertains to H/C delivery & service. Describe potential partnerships and initiatives of local community and H/C providers to address education, technology & access.

8) Courtney Young – Communication – Same Sex Partners H/C Rights

9) Kay Zwan – Patient Rights – Developing alliances with community DHS, legislators, healthcare community, organizations that are working to protect patients rights and access to care. National Patient Advocate Foundation, NC Justice Center – Healthcare Access Coalition, NC Disabilities Center, Patients before Profits, American Cancer Society, American Diabetes Association, American Kidney Foundation, Heart & Lung Foundation, Caring Community.                

I want to thank all of you again for your willingness and commitment to participate on the Wilmington Yes We Can Healthcare Reform Team.  I am confident that we will have an impact on the quality of lives of our families, community, state and nation through realizing our common goal – the creation and implementation of a Non-Discriminate Healthcare System Powered by Science. Please feel free to contact me if you have questions cell – 731-267-2792. 
With warm regard,
Kay Zwan