CureDuchenne is proud to sponsor SB 643 (Pan).
SB 643 will add Duchenne to the Genetically Handicapped Persons Program’s (GHPP) list of eligible medical conditions. Duchenne is a rare neuromuscular disorder characterized by progressive symmetric muscle weakness and degeneration stemming from the progressive loss of contractile function. Patients in California with Duchenne currently receive specialized coordinated care through the California Children Services program (CCS), a state program that serves children with rare, complex health care needs. When they age out of the CCS system at 21 years of age, their families are left to navigate a healthcare system that provides very little specialized care and support.
The GHPP is a state health care program for adults with certain genetic diseases. The GHPP provides complete coordinated services to its clients by working closely with doctors, nurses, pharmacists, and other members of the health care team. When the GHPP was created, the mean age at death for patients with Duchenne was around 19 years. Fortunately, various interventions which are available through specialized neuromuscular care centers, have led to improvements in quality of life and longevity so that children who are diagnosed today have the possibility of living longer. Duchenne is a multisystem disease that impacts a patient’s biological (neurology, cardiology, orthopedics, pulmonary, etc.) and mental health, so one aspect of care cannot be taken in isolation. Therefore, access to wraparound services like those that are offered through the GHPP are key features of treatment.
Adding Duchenne to the GHPP list of eligible conditions will improve continuity of care for this small, medically fragile population. Without the specialized care of knowledgeable physicians, the medical burden will revert to historically negative outcomes and negate the positive impact these patients have received while under superior care. For this reason, we are a proud sponsor of SB 643.
We encourage other organizations to join us and write a letter of support to the California Senate Health Committee.
We encourage families in California that are impacted by Duchenne to write letters of support as well.