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PROTECTING PATIENTS & FAMILIES

Individuals and caregivers affected by Chiari, syringomyelia, EDS, dysautonomia and other related disorders have enough to worry about. They should be protected by lawmakers, the health care industry and others in power. 

MODERNIZE LEGISLATION THAT PROTECTS FAMILIES.

Families affected by Chiari, syringomyelia, dysautonomia, EDS and more have a lot to deal with on a daily basis.

Families affected by Chiari, syringomyelia, dysautonomia, EDS and more have a lot to deal with on a daily basis.

Families affected by Chiari, syringomyelia, dysautonomia, EDS and more have a lot to deal with on a daily basis.

SUPPORT LEGISLATION THAT MAKES IT EASIER FOR

FAMILIES TO MANAGE DAILY LIFE

Whether it is going to school or work, pushing through pain to accomplish daily tasks, getting to and from many doctor appointments, educating others about the conditions, or just trying to live a normal life with friends and family— all of it can be complicated by chronic illness.  This can cut into social time, and it can even cause a delay in seeking medical care when it may be needed. [1]

This, of course, is unacceptable.  There are many ways that politicians can make it easier for families to manage these complexities.

 

Some ways that Congress can help would be to support legislation that:

  • Improves transportation infrastructure, making it safer and easier to get to and from doctor appointments

  • Increases accessibility of certain health plans to chronically ill patients, increasing their network of physicians

  • Simplifies access to social security and disability for patients in need

  • Removes Medicaid work requirements and other burdensome paperwork to increase access to care

  • Funds the training and education of specialists and primary care medical professionals to increase the availability of doctors, PAs and nurses who treat these complex patients

With cooperation from our representatives, we can bring complex, chronic care into the 21st century.

  1. Hayes SL, Salzberg CA, McCarthy D, Radley DC, Abrams MK, Shah T, Anderson GF, High-Need, High-Cost Patients: Who Are They and How Do They Use Health Care? A Population-Based Comparison of Demographics Health Care Use, and Expenditures. The Commonwealth Fund, August 2016.

  2. D Radley, SL Hayes and D. McCarthy. Assesing State Variation in High-Need Adult Population and Their Care Experiences, The Commonwealth Fund, August 2017.