A Clinical Bulletin from the Professional Resource Center of the National Multiple Sclerosis Society

http://www.nationalmssociety.org/pdf/forpros/PublicPolicy.pdf

April 2003

Healthcare professionals have an important role to play as advocates for people with multiple sclerosis and other health problems. With a modicum of knowledge about healthcare policy and political strategy, healthcare professionals can influence the development, passage, and implementation of legislation that will enhance many aspects of their patients’ care.

WHY ADVOCATE?

• The hopes and needs of patients and their healthcare providers should be made known to persons in positions to impact the quality of that care.
• Legislators and regulators must be kept aware of the impact of their policies on those who receive care.
• It is necessary to impart the views of those with the least voice in the policy debate—those who are chronically ill and/or disabled—to make the faces of individual patients real to the policy makers and managed care and insurance executives.

Healthcare policy might be defined as those issues concerning the organization, delivery, and financing of healthcare, starting from the patient/doctor encounter and extending to society as a whole. Other important issues concern federal funding of biomedical research and support for medical education. There are many issues deserving of an advocate’s support, including:

• Restructuring of Medicare
• Medicare prescription drug benefit
• Federal and state funding of Medicaid
• Maintaining the adequacy of Medicaid coverage, especially for vulnerable groups
• Funding for NIH and other research bodies
• Funding of graduate medical education programs
• Affordable, quality long-term and chronic illness care

Healthcare professionals should also help patients maintain and enjoy the rights they have already been awarded with regard to their medical condition, including:

• Americans with Disabilities Act (ADA), which guarantees full participation in employment, public services, public accommodations, and communications for people with disabilities.
• Family Medical Leave Act, which facilitates time off for employees with health concerns—their own or those of a family member. Eligible persons receive 12 weeks of unpaid leave every 12 months while maintaining healthcare and other job benefits.
• Health Insurance Portability and Accountability Act (HIPAA), which protects healthcare coverage for patients and their families when they change or lose their jobs.
• Social Security work incentives, which allow people on Social Security Disability Insurance (SSDI) to return to work without losing their insurance benefits, thereby easing the financial burden of attempting to regain self-sufficiency.

Political strategy is largely common sense. One must determine which issues have political importance and are therefore likely to appear on the healthcare policy agenda. This is accomplished by listening to the concerns of the public, the media, and political leaders. To influence the appropriate people, one must then determine which governmental body (agency, committee, subcommittee) is involved, and who has the decision-making power. It is most important to act when the “policy window” is open, and to continue to advocate for legislation until the necessary changes are accomplished.

HOW TO ADVOCATE EFFECTIVELY AT THE LOCAL AND NATIONAL LEVEL

• Acquire knowledge of political strategy and healthcare issues and an understanding of the federal and state budget process.
• Become familiar with the issues, develop preferred solutions, and share your message.
• Back up your views with solid research.
• Support legislation that contributes to the highest quality of healthcare, and stand behind policymakers who endorse it.
• Write and phone your legislators and regulators.
• Establish and maintain relationships with legislators and their staff.
• Work within networks and coalitions whose missions are similar to your own.
• Join the National MS Society’s advocacy efforts through your chapter’s government relations activities.

To advocate effectively for individuals with MS, you will need to practice good documentation. This includes detailing the effects of MS and its treatment, and noting the ways in which the patient’s disease is affecting activities of daily living. With such evidence, healthcare providers can advocate for their patients in such areas as insurance coverage, Social Security eligibility, and employment competency.
 

©2003 National Multiple Sclerosis Society