The Promoting Excellence Huntington's Disease Peer Workgroup recommends that
public and private funders:
- Expand pharmacy formularies to include all the medications that benefit
people with HD.
- Base utilization review and insurance reimbursement (public
and private) on individualized assessments performed by qualified clinicians
with HD, rather than on general categorical assessments based on other illnesses.
ongoing maintenance and analyses of national HD databases. These large databases
of people with HD and their families, maintained by the
Huntington Study Group and others, are critically important infrastructure and
of data (further explained in Appendix C).
- Fund interventional
studies employing rehabilitative services, evaluating the effects of rehabilitative
services on the level of function, symptoms
of life for people with HD.
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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.