(a)The Secretary of Health and Human Services shall appoint the chair of the advisory council. The chair shall not hold any other position, employment, or appointment within state government.
(b)Members of the advisory council shall be appointed by the State Public Health Officer, shall either reside in California or be employed
by a California-based company or organization, and include all of the following:
(1)Two physicians and surgeons licensed to practice in this state who have experience in treating patients with rare diseases, at least one of whom shall also treat
children.
(2)One registered professional nurse licensed to practice in this state who has experience in providing care to patients with rare diseases.
(3)One hospital administrator employed by a hospita
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(a)
The Secretary of Health and Human Services shall appoint the chair of the advisory council. The chair shall not hold any other position, employment, or appointment within state government.
(b)
Members of the advisory council shall be appointed by the State Public Health Officer, shall either reside in California or be employed
by a California-based company or organization, and include all of the following:
(1)
Two physicians and surgeons licensed to practice in this state who have experience in treating patients with rare diseases, at least one of whom shall also treat
children.
(2)
One registered professional nurse licensed to practice in this state who has experience in providing care to patients with rare diseases.
(3)
One hospital administrator employed by a hospital that treats rare disease patients.
(4)
One representative of the California health care coverage industry.
(5)
One representative of the biopharmaceutical industry.
(6)
One representative of the scientific community who is engaged in rare disease research.
(7)
One rare disease geneticist or genetic counselor.
(8)
Up to five individuals who are either a rare disease patient or a caregiver to a rare disease patient. The advisory council shall not include more than three individuals from each category.
(9)
One medical social worker or mental health provider who works with rare disease patients.
(10)
Up to two representatives of patient advocacy organizations that operate within this state.
(c)
The advisory council may advise the California Health and Human Services Agency on additional at-large appointments to the advisory council that may be necessary to carry out its duties. At-large appointments to the advisory council may serve on an ad hoc basis.
(d)
All members of the advisory council shall serve without compensation, but the members appointed pursuant to subdivision (b) may be reimbursed for travel and other miscellaneous expenses necessary to perform their duties
if funds are made available to the advisory council for its purposes.
(e)
Members of the advisory council appointed pursuant to subdivision (b) shall serve for the duration of this part. Any vacancy in the membership of the advisory council shall be filled in the same manner as provided for in the original appointment.
(f)
Each member of the advisory council shall annually sign a conflict of interest statement disclosing any economic or other relationship with an entity that could influence the member’s decisions. At least 20 percent of the advisory council’s members shall not have a conflict of interest with respect to an insurer, pharmaceutical benefits manager, or pharmaceutical manufacturer.