New Online Effort to Help Elevate Patient Voices on Health Care Issues

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Patients with autoimmune diseases have a new on-line way to help become involved with public policy discussions about access to the care they need.

Two patient focused organizations, Autoimmune Advocacy Alliance (A3) and ConnecT1D have developed a new entity, ImpACT Washington Health (IWH) to specifically aid patients and health care advocates take action on certain policy issues impacting health care.

Main features at ImpACT Washington Health include 1) a signing petition; 2) the opportunity to share stories about personal challenges in accessing quality health care for people with autoimmune diseases. The immediate policy goal of ImpACT Washington Health is the challenge of controlling out-of-pocket expenses.

IWH can help elevate the patient voice on health care issues and policies, inviting discussion and change.

“IWH can help elevate the patient voice on health care issues and policies, inviting discussion and change.” said Cheryl Lubbert with the Autoimmune Advocacy Alliance. “Finding solutions to help lower or cap out-of-pocket costs is an issue that needs immediate attention. A feature way we intend to bring this attention is by capturing personal stories to help educate our community and policy makers.”

Efforts in Washington have recently begun highlighting high out-of-pocket costs that can deter treatments for those with autoimmune diseases. More and more Washington families are impacted by high out-of-pocket costs resulting in an unmanageable financial burden. IWH will use individual stories to help influence better insurance coverage so more patients have access to the care they need. People can sign an online petition asking for a new/better solution to limiting out-of-pocket costs for the medications patients with autoimmune diseases rely on.”

“Without a limit to out-of-pocket costs, I have to make a very hard choice in my management of my Type 1 Diabetes between what I can afford right now and what gives me the best care,” said Josh, one patient featured on the ImpACT Washington Health web site. “My care is dictated by what my insurance will cover. I know there are better and more effective management tools but I don’t have access to them.” Chanel, 24, shares the many challenges of living with multiple autoimmune conditions. “When you have a chronic illness that is incurable, you start over every year by reaching your deductible and out-of-pocket maximum and there are things that are not covered. This will never end for me and will never end for my family.”

ImpACT Washington Health provides a new opportunity to learn and take action on certain policies that affect personal health care. A3 believes this collective effort that will make patient voices stronger and louder.

For more information and to get involved, please visit Impact WA Health.

Autoimmune Advocacy Alliance

The Autoimmune Advocacy Alliance (A3) is a coalition of groups supporting patients with autoimmune diseases. These conditions are chronic, without cures, cause pain, disability and are a leading cause of death in women. Autoimmune disorders include rheumatoid arthritis, type 1 diabetes, Crohn’s Disease, lupus, multiple sclerosis and 75 others. You can join the effort by visiting a3autoimmunity.org.

ConnecT1D

ConnecT1D connects those living with Type 1 Diabetes to the programs and services in their community. Visit them at connect1D.org.

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