Little Lobbyists believe that health care is a human right. We also believe all health care policy in the United States, especially policies designed to create a system of universal health care, must include appropriate coverage for the health care of people with complex medical needs and protections for the civil rights of people with disabilities. By doing so, legislators can finally ensure that every American has access to health care. All must mean ALL.
Below, please find a summary of the top three areas of concern for our community regarding the proposals for universal health care policies.
Long Term Services and Supports
In addition to traditional health care services, provision for Long Term Services and Supports (LTSS) MUST be included in any and all new health care policy in order to provide adequate support for, and protect the civil rights of, individuals with disabilities and complex medical needs.
Priority must be placed on providing LTSS services in the community and NOT in an institutional setting; we must reverse the existing, systemic “institutional bias.” Home and Community-Based Services (HCBS) provide person-centered support for daily life activities and enable people with disabilities to remain in their homes and communities and engage in all aspects of everyday life - family, school, employment, and more. HCBS are more cost effective, provide better outcomes, and preserve the freedom, dignity, and civil rights of individuals needing care.
Any system must recognize and support the central role family caregivers play in planning for and providing Long Term Services and Supports.
For more information, please refer to the principles on including LTSS from the Consortium for Citizens with Disabilities.
Continuity of Care
Sweeping changes to the way health care is delivered in our country will be disruptive. However, no change should disrupt the access to, or quality of, care for individuals with complex medical needs. Being able to continue seeing trusted specialists, access care centers, and obtain vital medications, equipment, supplies, therapies, private duty nursing and more, is a matter of life and death.
In the current system, Medicaid coverage for individuals with complex medical needs and disabilities is inconsistent and highly variable from state-to-state, even from individual-to-individual within states. It is essential that this inequity be eliminated to provide relief for those not yet covered without compromising the coverage of those who currently have their needs fully met.
We need to increase support for research and development of treatments and cures for illnesses and diseases from the very common to the exceedingly rare. The people who need these treatments and cures must also be able to afford them.
People with complex medical needs use a wide variety of medications, some common, some less so. These diverse needs must be adequately considered when determining the list of prescription drugs comprising any formulary. Appropriate provisions should also exist for those needing medication not included in the formulary.
For the majority of pharmaceuticals, when research and development is predominantly funded by public dollars, we believe Medicare/the Government must be able to negotiate with drug companies to secure reasonable prices and prevent the price gouging of medications, like insulin and epipens. The recommendations on making medicines affordable developed by the National Academies of Sciences, Engineering, and Medicine offer some valuable suggestions.
For pharmaceuticals developed for rare/orphan disease, some of which are funded through “venture philanthropy” and other private sources (like medications for Cystic Fibrosis and targeted genetic medicines for cancers), a carefully considered approach must be developed to effectively support and incentivize innovation while controlling costs for this small, very diverse, rare patient population.
Please note: at this time, Little Lobbyists is not endorsing any specific plan or policy. This document is meant to outline our concerns and provide guidance for discussion regarding proposals for all new universal health care legislation.