BILL NUMBER:A8826

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

SUMMARY OF SPECIFIC PROVISIONS: 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 care centers
provided such not-for-profit organization maintains a national registry
of cystic fibrosis clinical data shall be exempt 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 States (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 chil-
dren and adults with CF. The predicted age of 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 clin-
ical 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 Specialty
Pharmacy Program, CF Services is ineligible to participate as it does
not and cannot provide the number and range of 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 coordi-
nation of care. People with CF are routinely more on and off the Medi-
caid 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 emergen-
cy supplies of medications and works with patients to find other cover-
age. 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 phar-
macy continues to provide an effective fulfillment function for the
development of new drugs to effectively treat the disease.

PRIOR LEGISLATIVE HISTORY: None.

FISCAL IMPLICATIONS: None.

EFFECTIVE DATE: This act shall take effect immediately.