BILL NUMBER:  S5872

 TITLE OF BILL :
An act to amend the social services law, in relation to the specialty
pharmacy program


 PURPOSE :
This bill would exempt any pharmacy owned and operated by a
not-for-profit organization solely for the purpose of providing drugs
to individuals diagnosed with cystic fibrosis as part of a
comprehensive clinical care program approved by the national
organization that accredits cystic fibrosis (CF) care centers provide
such not for profit organization maintains a national registry of
cystic fibrosis clinical data shall be exempt from the specialty
pharmacy program.

 SUMMARY OF PROVISIONS :
Section 1 amends the social services law to exempt pharmacies owned
and operated by a not-for profit organization solely for the purpose
of providing drugs to individuals diagnosed with cystic fibrosis as
part of a comprehensive clinical care program approved by the national
organization that accredits cystic fibrosis care centers and maintains
a national registry of cystic fibrosis clinical care from the
specialty pharmacy program.

              

 JUSTIFICATION :
Cystic fibrosis is an inherited chronic disease that affects the lungs
and digestive system of about 30,000 children and adults in the United
State (70,000 worldwide). A defective gene and its protein product
cause the body to produce unusually thick, sticky mucus that clogs the
lungs and leads to life-threatening lung infections; and obstructs the
pancreas and stops natural enzymes from helping the body break down
and absorb food. In the 1950s, few children with cystic fibrosis lived
to attend elementary school.  Today, advances in research and medical
treatments have further enhanced and extended life for children and
adults with CF. The predicted age of a survival for a person with
Cystic Fibrosis is now more than 37 years of age.  Many children and
young adults with CF take over twenty medications per day including
four orally inhaled medications with treatment times exceeding three
hours per day.

The Cystic Fibrosis Foundation has since its inception in the 1950s
provided pharmacy services to patients as part of a comprehensive
clinical support program which includes CF care centers across the
state.

CF Services is the largest provider of pharmacy services, including
specialty medications, for the state's CF Medicaid patients, serving
40% of those with the disease. Under the current criteria for the
Special Pharmacy Program, CF Services is ineligible to participate as
it does not and cannot provide the number and range or drugs required.
The CF pharmacy only provides drugs exclusively for the treatment of
Cystic Fibrosis.

In fact, if enacted the specialty pharmacy program as recently
proposed would exclude the CF pharmacy which threatens the continuity
and coordination of care. People with CF are routinely more on and off
the Medicaid rolls as their income fluctuates. The CF pharmacy
provides a safety net for those who lose their Medicaid eligibility so
they do not also lose access to their critical medications. CF
Services provides emergency supplies of medications and works with
patients to find other coverage. This allows New York Medicaid
patients who lose eligibility to continue treatment and keeps them out
of the hospital. This practice ultimately saves the state money since

these same patients are likely to become Medicaid eligible again and
will require less care if they are able to maintain their health.

The importance of the CF pharmacy to patients and the coordinated care
of CF patients cannot be understated. Finally, and importantly, the
pharmacy continues to provide an effective fulfillment function for
the development of new drugs to effectively treat the disease.

 BILL HISTORY :
None.

 FISCAL IMPLICATIONS :
None.

 EFFECTIVE DATE :
This bill shall take effect immediately.