May 29, 2009

The Honorable Edward Kennedy                               The Honorable Michael Enzi   
Chairman                                                               Ranking Member
Senate HELP Committee                                          Senate HELP Committee

428 Dirksen Senate Office Building                            835 Hart Senate Office Building

Washington, DC 20510                                            Washington, DC 20510

RE: Health Disparities and People with Limb Loss

Dear Chairman Kennedy and Ranking Member Enzi:

The Amputee Coalition of America (ACA) is the leading national organization serving the needs of people of all ages living with the loss or absence of limbs.  We have members, industry partners, peer visitors and support group leaders throughout the country.     

Almost two million Americans are living with limb loss or limb deficiency as a result of disease, trauma or birth defect.  As the emerging public health crisis of diabetes continues to escalate, so will the number of amputations.  It is essential that the needs of people with limb loss are taken into consideration as health care proposals are developed in order to ensure that they are able to lead independent, productive lives. 

We are writing to urge you to ensure that health care reform will eliminate the disability-based health disparities faced by the more than 54 million Americans with disabilities, including people with limb loss.

Research shows that individuals with disabilities experience a lower rate of education, and employment, and a higher rater of poverty when compared to non-disabled persons. The Agency for Healthcare Research and Quality (AHRQ) reports that private health insurance is less available to people with disabilities. Two Surgeon Generals’ reports have called attention to the need to address disability-based health disparities in access to clinical care, prevention and wellness, and public health services.  

The main cause of acquired limb loss is poor circulation in a limb due to arterial disease, with more than half of all amputations occurring among people with diabetes mellitus.  Today, diabetes is much more common in African Americans,  Hispanic/Latino Americans, and American Indians/Alaska Natives.   It is estimated that more than 75 percent of the amputations caused by diabetes complications might be prevented.  Proper testing and treatment must be available in order to prevent both primary and secondary amputation. 

Non-white, low-income patients without commercial insurance are more likely to delay diagnosis of peripheral vascular disease (PVD), which often results in amputation of the lower limbs. 

In spite of the startling evidence of the disability-based health disparities and the inherent costs to treat preventable conditions, current federal law does not consider individuals with disabilities a “medically underserved population” and fails to recognize disability-based health disparities under any federal program that addresses other health disparities. Health reform must fix this injustice.

Heath care reform must end these health disparities by ensuring:

·         Access to affordable coverage for Americans with disabilities without regard to pre-existing conditions or whether the intervention is habilitative or rehabilitative in nature;

• Inclusion of individuals with disabilities in the definitions of “medically underserved populations” and “cultural competence;”  

• Low income, medically complex patients at risk for limb loss must receive timelier and high performance care.  This should be combined with community-based public health and preventive medicine interventions that address the socioeconomic issues that impact these patients’ access to care.  

• Make available educational campaigns and appropriate access to screening for low-income patients to ensure early diagnosis of peripheral vascular disease (PVD) in order to decrease amputation rates.

• A delivery system prepared to provide appropriate, accessible, and equivalent care for individuals with disabilities at all levels of service;

• Inclusion of individuals with disabilities in all data collection and reporting required for racial, ethnic, gender, or geographic health disparities, in a manner that can facilitate identification and reduction of disparities associated with physical, mental health, cognitive, sensory, intellectual, and/or developmental disabilities;

• Equal treatment of the population of individuals with disabilities in all policies, programs, and research designed to decrease health disparities.

• Inclusion of individuals with disabilities in prevention and wellness program;

• A healthcare workforce trained to address the needs of individuals with disabilities, including physical, mental health, cognitive, sensory, intellectual, and/or developmental disabilities;
• Development of specific quality measures to improve primary and preventative care for individuals with disabilities;

• Development and strengthening of the “medical home” to meet the healthcare needs of individuals with disabilities;

• Health information technology systems that collect aggregate specific data about physical, mental health, cognitive, sensory, intellectual, and/or developmental disabilities while maintaining individual privacy; and

• Inclusion of “disabilities” and “sign language interpreters” in the Office of Minority Health’s National Standards on Culturally and Linguistically Appropriate Services (CLAS)

The ACA understands that health care reform presents an enormous challenge.  We feel that any healthcare reform proposal that truly gets at improving health systems and enhancing access must address the healthcare needs of people with limb loss.  We hope that our suggestions will help in this complicated process. 

As the population ages and the diabetes epidemic continues to increase, limb loss will affect even more Americans.  It is essential that health care reform take into consideration limb loss prevention opportunities as well as the essential care needed to enable people with limb loss to live independent, productive lives.

This is the right time and healthcare reform is the right place to correct disability-based health disparities so that healthcare reform is for all Americans. Thank you.

Sincerely,

Kendra Calhoun              Dr. Jeffrey Cain                          Morgan Sheets

CEO & President             Board of Directors                      National Advocacy Director