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HOUSE DOCKET, NO. 2269 FILED ON: 1/19/2023
HOUSE . . . . . . . . . . . . . . . No. 1161
The Commonwealth of Massachusetts
_________________
PRESENTED BY:
Bud L. Williams and David M. Rogers
_________________
To the Honorable Senate and House of Representatives of the Commonwealth of Massachusetts in General
Court assembled:
The undersigned legislators and/or citizens respectfully petition for the adoption of the accompanying bill:
An Act to improve sickle cell care.
_______________
PETITION OF:
NAME:DISTRICT/ADDRESS :DATE ADDED:Bud L. Williams11th Hampden1/19/2023David M. Rogers24th Middlesex1/19/2023Rob Consalvo14th Suffolk2/9/2023 1 of 23
HOUSE DOCKET, NO. 2269 FILED ON: 1/19/2023
HOUSE . . . . . . . . . . . . . . . No. 1161
By Representatives Williams of Springfield and Rogers of Cambridge, a petition (accompanied
by bill, House, No. 1161) of Bud L. Williams, David M. Rogers and Rob Consalvo for
legislation to to improve sickle cell disease care. Financial Services.
The Commonwealth of Massachusetts
_______________
In the One Hundred and Ninety-Third General Court
(2023-2024)
_______________
An Act to improve sickle cell care.
Be it enacted by the Senate and House of Representatives in General Court assembled, and by the authority
of the same, as follows:
1 SECTION 1. Chapter 118E of the General Laws is hereby amended by inserting after
2section 10N the following section:
3 Section 10O. (a) For the purposes of this section, the following words shall, unless the
4context clearly requires otherwise, have the following meanings:-
5 (1) "Iatrogenic infertility", in impairment of fertility by surgery, radiation, chemotherapy,
6or other medical treatment affecting reproductive organs or processes, including without
7limitation treatment for sickle cell disease.
8 (2) "Physician", an individual licensed to practice under section 2 of chapter 112.
9 (3) "Qualified enrollee", an individual who:
10 (A) is enrolled in the MassHealth program pursuant to section 9; 2 of 23
11 (B) has been diagnosed with a form of cancer or other disease by a physician;
12 (C) needs treatment for that cancer or other disease that may cause substantial risk of
13sterility or iatrogenic infertility, including surgery, radiation, or chemotherapy; and
14 (D) has a primary illness that has impaired the patient’s fertility and ability to reproduce
15normally.
16 (4) "Standard Fertility Preservation Services", procedures based upon current evidence-
17based standards of care established by the American Society for Reproductive Medicine, the
18American Society of Clinical Oncology, or other national medical associations that follow
19current evidence-based standards of care, and includes the retrieval and storage of two complete
20oocyte cycles and the collection and storage of two sperm samples.
21 (b)(1) Before January 1, 2024, the division of medical assistance shall apply for a
22Medicaid waiver or a state plan amendment with the Centers for Medicare & Medicaid Services
23of the United States Department of Health and Human Services to implement the coverage
24described in subsection (b).
25 (2) If the waiver or state plan amendment described in subsection (a) is approved,
26MassHealth shall provide coverage to a qualified enrollee for standard fertility preservation
27services.
28 (c) Before November 1, 2025, and before November 1 of each third year after 2025, the
29division of medical assistance shall calculate the change in state spending attributable to the
30coverage described in subsection (b)(2), and report this amount to house and senate committees
31on ways and means 3 of 23
32 Commercial Insurance Coverage for Fertility Preservation Services
33 SECTION 2. (a) Notwithstanding any general or special law to the contrary, any policy,
34contract or certificate of health insurance subject to chapters 32A, 175, 176A, 176B, 176G, 176I,
35176J or 176Q of the General Laws must provide coverage for medically necessary expenses for
36standard fertility preservation services when a necessary medical treatment may directly or
37indirectly cause iatrogenic infertility to an enrollee.
38 (b) In determining coverage pursuant to this section, an insurer shall not discriminate
39based on an individual's expected length of life, present or predicted disability, degree of medical
40dependency, quality of life, or other health conditions, nor based on personal characteristics,
41including age, sex, sexual orientation, or marital status.
42 (c) For the purposes of this section, the following words shall, unless the context clearly
43requires otherwise, have the following meanings:-
44 “Iatrogenic infertility”, in impairment of fertility by surgery, radiation, chemotherapy, or
45other medical treatment affecting reproductive organs or processes, including without limitation
46treatment for sickle cell disease.
47 “May directly or indirectly cause”, the likely possibility that treatment will cause a side
48effect of infertility, based upon current evidence-based standards of care established by the
49American Society for Reproductive Medicine, the American Society of Clinical Oncology, or
50other national medical associations that follow current evidence-based standards of care.
51 “Standard fertility preservation services”, procedures based upon current evidence-based
52standards of care established by the American Society for Reproductive Medicine, the American 4 of 23
53Society of Clinical Oncology, or other national medical associations that follow current
54evidence-based standards of care, and includes the retrieval and storage of two complete oocyte
55cycles and the collection and storage of two sperm samples.
56 STATEWIDE SCD STEERING COMMITTEE
57 SECTION 3. (a)(1) Notwithstanding any general or special law to the contrary, there is
58hereby established a Statewide Steering Committee on Sickle Cell Disease within the department
59of public health.
60 (2) The Steering Committee under this section shall consist of:
61 (A) two representatives from the Massachusetts Sickle Cell Disease Association
62including the Executive Director or their designee;
63 (B) three medical professionals from major Sickle Cell Disease treatment centers in the
64commonwealth who shall be appointed by the commissioner;
65 (C) the Executive Director of the Massachusetts Association of Community Health
66Workers or their designee;
67 (D) the President of the Massachusetts Chapter of the National Association of Social
68Workers or their designee;
69 (E) two members who shall be appointed by the commissioner, one of whom shall be an
70expert on the biology of the disease, and one of whom shall be an expert on the psycho-social
71aspect of the disease; 5 of 23
72 (F) two representatives of the department of elementary and secondary education who
73shall be appointed by the commissioner, including one of whom is knowledgeable about the right
74to comparable education, supportive services and accommodations under section 504 of the
75Rehabilitation Act of 1973;
76 (G) one representative of the Black and Latino Caucus who shall be appointed by the
77commissioner;
78 (H) one representative of the Asian Caucus who shall be appointed by the commissioner;
79 (I) two sickle cell disease patients who shall be appointed by the Governor, one of which
80shall be over 25 years in age and the other shall be between 18 and 25 years in age;
81 (J) a parent of a minor child with sickle cell disease who shall be appointed by the
82Governor;
83 (K) a parent of a secondary or post-secondary school age youth with sickle cell disease
84who shall be appointed by the commissioner; and
85 (L) one representative who has a background in racial health disparities who shall be
86appointed by the Governor.
87 The representatives of nongovernmental organizations shall serve staggered 3–year
88terms. Vacancies of unexpired terms shall be filled within 60 days by the appropriate appointing
89authority.
90 (3) The Steering Committee under this section shall: 6 of 23
91 (A) establish institution and community partnerships, including hospitals, and institutions
92of higher education;
93 (B) establish a statewide network of stakeholders, including parents, home health care
94providers, school-based nurses, and the Massachusetts Sickle Cell Disease Association who are
95committed to care for individuals with sickle cell disease collaboratively in an inclusive setting;
96 (C) establish a statewide network of racially and culturally competent stakeholders who
97include general and special education administrators and teachers and paraprofessionals;
98 (D) oversee the development of educational materials for individuals with sickle cell
99disease, the public, and health care providers about the assistance available to such individuals in
100the commonwealth, including local school district responsibilities for care of such individuals;
101 (E) identify funding sources for implementing or supporting the actions, studies, policies
102required by federal and state laws and regulations, or recommended by the Steering Committee,
103including funding from:
104 (i) state, federal, and local government sources; and
105 (ii) private sources;
106 (F) investigate and report on a standard of basic, multidisciplinary care for patients across
107the commonwealth; and
108 (G) establish subcommittees as appropriate.
109 (4) The department may, in consultation with the Statewide Steering Committee, provide
110services relating to sickle cell disease, including: 7 of 23
111 (A) educational programs on sickle cell disease for individuals affected by the disease,
112including:
113 (i) education on the rights of individuals with sickle cell disease, such as, without
114limitation, the right not to be discriminated against and the right to receive appropriate
115educational programming, health related services and accommodations necessary to access such
116programming and services;
117 (ii) expectations, options, and responsibilities of families of individuals with sickle cell
118disease;
119 (iii) challenges and responsibilities of caregivers of individuals with sickle cell disease;
120 (iv) obligations of employees at primary and secondary schools; and
121 (v) challenges and responsibilities of health care providers;
122 (B) social services support to individuals with sickle cell disease, including support from
123social workers and community health workers to provide information on services that may be
124available to the individual;
125 (C) hemoglobin electrophoresis or genetic testing for the presence of sickle cell disease;
126 (D) genetic counseling;
127 (E) assistance with any available reimbursement for medical expenses related to sickle
128cell disease;
129 (F) education and counseling services for parents and other family members and
130caretakers after the receipt of sickle cell trait test results from the Newborn Screening Program as 8 of 23
131required by section 270.006(A)(2)(e) of chapter 105, Code of Massachusetts Regulations,
132provided that, with the consent of parents and other family members and caretakers, such
133services may be provided in whole or in part by the Massachusetts Sickle Cell Disease
134Association; and
135 (G) any other programs or services that are necessary to decrease the use of acute care
136services by individuals who have sickle cell disease.
137 (5) The department shall, in consultation with any other agency of the commonwealth as
138the department determines appropriate, provide the services in paragraph (4) through
139community–based organizations, including specifically, pre-K, elementary and secondary
140schools as well as institutions for higher education for all affected school-age children, youth,
141and older students to the extent practicable.
142 (6) The Steering Committee, in conjunction with the department and other relevant
143stakeholders, shall study and make recommendations on:
144 (A) how to enhance access to services for individuals with sickle cell disease with a focus
145on areas in the commonwealth where there is a statistically high number of individuals with
146sickle cell disease or in areas where there is a lack of providers with expertise in treating sickle
147cell disease;
148 (B) whether to establish a sickle cell disease registry, and if recommended, the process
149and guidelines for establishing a registry and obtaining information consistent with informed
150consent and protecting data privacy; 9 of 23
151 (C) how to enhance the coordination of health care services for individuals with sickle
152cell disease who are transitioning from pediatric to adult health care, including the identification
153of available resources for individuals who are transitioning; and
154 (D) how to engage with community–based health fairs and other community–sponsored
155events in areas with a statistically high number of individuals with sickle cell disease to provide
156outreach and education on living with sickle cell disease and how to access health care services.
157 (b) The department shall, in consultation with the Steering Committee, establish and
158implement a system the provides information on the sickle cell trait to any individual who has
159the sickle cell trait and, if the individual is a minor, to the individual’s family.
160 (c) The department shall include the following in the information provided under
161subsection (b):
162 (1) how the sickle cell trait impacts the health of an individual with the trait;
163 (2) how the sickle cell trait is passed from a parent to a child; and
164 (3) implications for pregnancy.
165 (d) The department shall maintain in a conspicuous location on its website a list of
166resources for health care practitioners to use to improve their understanding and clinical
167treatment of individuals with sickle cell disease or the sickle cell trait, including information on
168the health impacts of carrying the sickle cell trait.
169 (e) For the purposes of this section, the following word shall, unless the context clearly
170requires otherwise, have the following meaning:- 10 of 23
171 “Steering Committee”, the Statewide Steering Committee on Sickle Cell Disease.
172 SICKLE CELL DISEASE DETECTION AND EDUCATION PROGRAM (ADULT
173SCREENING AND EDUCATION- RELATED GRANTS)
174 SECTION 4. (a) Notwithstanding any general or special law to the contrary, there is
175hereby established within the department of public health the sickle cell disease detection and
176education program to: (1) promote screening and detection of sickle cell disease, especially
177among unserved or underserved populations; (2) educate the public regarding sickle cell disease
178and the benefits of early detection; and (3) provide counseling and referral services.
179 (b) The program under this section shall include:
180 (1) establishment of a statewide public education and outreach campaign to publicize
181evidence-based sickle cell disease screening, detection and education services. The campaign
182shall include: general community education, outreach to specific underserved populations,
183evidence based clinical sickle cell disease screening services, and an informational summary that
184shall include an explanation of the importance of clinical examinations and what to expect during
185clinical examinations and sickle cell disease screening services;
186 (2) provision of grants to approved organizations pursuant to subsection (c) and for
187community based organizations pursuant to subsection (d);
188 (3) compilation of data concerning the program and dissemination of such data to the
189public; and
190 (4) development of health care professional education programs including the benefits of
191early detection of sickle cell disease and clinical examinations, the recommended frequency of 11 of 23
192clinical examinations and sickle cell disease screening services, and professionally recognized
193best practices guidelines.
194 (c)(1) Under the program, the commissioner of public health shall make grants in
195amounts appropriated to approved organizations for the provision of services relating to the
196evidence-based screening and detection of sickle cell disease as part of this program. The
197services required to be provided under such grants shall include:
198 (A) promotion and provision of early detection of sickle cell disease, including clinical
199examinations and sickle cell disease screening services;
200 (B) provision of counseling and information on treatment options and referral for
201appropriate medical treatment;
202 (C) dissemination of information to unserved and underserved populations as determined
203by the commissioner, to the general public and to health care professionals concerning sickle cell
204disease, the benefits of early detection and treatment, and the availability of sickle cell disease
205screening services at no cost to such populations;
206 (D) identification of local sickle cell disease screening services within the approved
207organization's region;
208 (E) provision of information, counseling and referral services to individuals diagnosed
209with sickle cell disease; and
210 (F) provision of information regarding the availability of medical assistance, including
211medical assistance for an individual who is eligible for such assistance pursuant to section 9 of 12 of 23
212chapter 118E of the General Laws, to an individual who requires treatment for sickle cell
213disease.
214 (2) The commissioner shall give notice and provide opportunity to submit applications
215for grants under the program. In order to be considered for a grant, an applicant must show
216evidence of the following, relating to the services the applicant proposes to provide:
217 (A) ability to provide and to ensure consistent and quality services under the program;
218 (B) expertise in providing the service;
219 (C) capacity to coordinate services with physicians, hospitals and other appropriate local
220institutions or agencies;
221 (D) ability to provide the service to unserved or underserved populations; and
222 (E) ability to provide the service in accordance with the standards specified in
223subdivision three of this section.
224 Applications shall be made on forms provided by the commissioner.
225 (3) The commissioner shall develop standards for the implementation of grants under the
226program by approved organizations, which shall ensure the following:
227 (A) integration of the approved organization with existing health care providers;
228 (B) maximizing third party reimbursement; and
229 (C) provision of services to unserved or underserved populations. 13 of 23
230 (4) Within the amounts of state or federal funds appropriated for the program, approved
231organizations may be authorized by the department to provide such services for populations
232served under this title. Services may include evidence based screening, patient education,
233counseling, follow-up and referral.
234 (5) Every organization receiving grants under this subsection shall submit to the
235commissioner, on or before October first of each year, a report of such organization's activities,
236including an assessment of the organization's programs and such data as the commissioner deems
237relevant and necessary to accomplish the purposes of the program
238 (d)(1) Under the program, the commissioner shall make grants within amounts
239appropriated for community based organizations to provide post-diagnosis counseling, education
240and outreach programs for persons diagnosed with sickle cell disease based upon criteria to be
241developed by the commissioner.
242 (2) The commissioner shall provide notice and opportunity for community-based
243organizations to submit applications to provide post-diagnosis sickle cell disease counseling,
244education and outreach programs. Such applications shall be on forms established by the
245commissioner.
246 (e) The commissioner shall submit, on or before December first of each year, an annual
247report to the governor and the legislature concerning the operation of the program. The reports
248shall include the experience of the program in providing services under this act. The annual
249report shall include strategies for implementation of the sickle cell disease awareness program
250and for promoting the awareness program to the general public, state and local elected officials,
251and various public and private organizations, associations, businesses, industries, and agencies. 14 of 23
252Organizations receiving grants under this act shall provide data and assessments as the
253commissioner may require for the report. The report shall include any recommendations for
254additional action to respond to the incidence of sickle cell disease in the commonwealth.
255 (f) For the purposes of this section, the following words shall, unless the context clearly
256requires otherwise, have the following meanings:-
257 “Community-based organizations”, free-standing organizations in which sickle cell
258disease survivors hold significant decision-making responsibility, and which offer a broad range
259of sickle cell disease education and support services free of charge.
260 “Program”, sickle cell disease detection and education program.
261 “Unserved or underserved populations", people having inadequate access and financial
262resources to obtain sickle cell disease screening and detection services, including people who
263lack health coverage or whose health coverage is inadequate or who cannot meet the financial
264requirements of their coverage for accessing detection services.
265 SCD REGISTRY AND REPORTS- COMPREHENSIVE DATA COLLECTION ON
266PEOPLE LIVING WITH SCD OR ITS VARIANTS
267 SECTION 5. (a)(1) Notwithstanding any general or special law to the contrary, the
268commissioner of public health or designee shall, in accordance with regulations adopted by the
269department of public health pursuant to subsection (b), and in consultation with the
270Massachusetts Sickle Cell Disease Association, establish and maintain a system for the reporting
271of information on sickle cell disease and its variants. Said system shall include a record of the
272cases of sickle cell disease and its variants which occur in the commonwealth along with such 15 of 23
273information concerning the cases as may be appropriate to form the basis for: (A) conducting
274comprehensive epidemiologic surveys of sickle cell disease and its variants in the
275commonwealth; and (B) evaluating the appropriateness of measures for the treatment of sickle
276cell disease and its variants.
277 (2) Hospitals, medical laboratories, and other facilities that provide screening, diagnostic
278or therapeutic services to patients with respect to sickle cell disease and its variants shall report
279the information prescribed by the regulation promulgated pursuant to subsection (b).
280 (3) Any provider of health care who diagnoses or provides treatment for sickle cell
281disease and its variants, except for cases directly referred to the provider or cases that have been
282previously admitted to a hospital, medical laboratory or other facility described in paragraph (2),
283shall report the information prescribed by the regulation adopted pursuant to subsection (b).
284 (b) The department of public health shall, by regulation:
285 (1) prescribe the form and manner in which information on cases of sickle cell disease
286and its variants must be reported in compliance with any applicable federal privacy law;
287 (2) prescribe the information that must be included in each report, which must include,
288without limitation: (A) the name, address, age and ethnicity of the patient; (B) the variant of
289sickle cell disease with which the person has been diagnosed; (C) the method of treatment; (D)
290any other diseases from which the patient suffers; (E) information concerning the usage of and
291access to health care services by the patient; and (F) if a patient diagnosed with sickle cell
292disease and its variants dies, his or her age at death and cause of death; and 16 of 23
293 (3) establish a protocol for allowing appropriate access to and preserving the
294confidentiality of the records of patients needed for research into sickle cell disease and its
295variants;
296 (4) establish a protocol for allowing information, in accordance with the preceding
297subsections, to be communicated with Statewide Steering Committee on Sickle Cell Disease, the
298sickle cell disease services program, and within the department as determined appropriate by the
299commissioner.
300 (c) The chief administrative officer of each health care facility in the commonwealth shall
301make available to the commissioner or designee the records of the health care facility for each
302case of sickle cell disease and its variants. The department of public health shall abstract from
303the records of a health care facility or shall require a health care facility to abstract from its own
304records such information as is required by regulations promulgated pursuant to subsection (b).
305The department shall compile the information in a timely manner and not later than 6 months
306after receipt of the abstracted information from the health care facility. The department shall by
307regulation adopt a schedule of fees which must be assessed to a health care facility for each case
308from which information is abstracted by the department. Any person who violates this section is
309subject to an administrative penalty established by regulation by the department.
310 (d) The department shall publish reports based upon the information obtained pursuant to
311subsections (a), (b), and (c) and shall make other appropriate uses of the information to report
312and assess trends in the usage of and access to health care services by patients with sickle cell
313disease and its variants in a particular area or population, advance research and education 17 of 23
314concerning sickle cell disease and its variants and improve treatment of sickle cell disease and its
315variants and associated disorders. The reports must include, without limitation:
316 (1) information concerning the locations in which patients diagnosed with sickle cell
317disease and its variants reside, the demographics of such patients and the utilization of health
318care services by such patients;
319 (2) the information described in paragraph (1), specific to patients diagnosed with sickle
320cell disease and its variants who are over 60 years of age or less than 5 years of age; and
321 (3) information on the transition of patients diagnosed with sickle cell disease and its
322variants from pediatric to adult care upon reaching 18 years of age.
323 (e) The department shall provide any qualified researcher whom the department
324determines is conducting valid scientific research with data from the reported information upon
325the researcher’s: (1) compliance with appropriate conditions as established under the regulations
326of the department; and (2) payment of a fee established by the department by regulation to cover
327the cost of providing the data.
328 (f) The commissioner or designee shall analyze the information obtained pursuant to
329subsections (a), (b) and (c) and the reports published pursuant to subsection (d) to determine
330whether any trends exist in the usage of and access to health care services by patients with sickle
331cell disease and its variants in a particular area or population.
332 (g) If the commissioner or designee determines that a trend exists in the usage of and
333access to health care services by patients with sickle cell disease and its variants in a particular
334area or population, the commissioner or designee shall work with appropriate governmental, 18 of 23
335educational and research entities to investigate the trend, advance research in the trend and
336facilitate the treatment of sickle cell disease and its variants and associated disorders.
337 (h) The department shall not reveal the identity of any patient, physician, or health care
338facility which is involved in any reporting required by this section unless the patient, physician
339or health care facility gives prior written consent to such a disclosure. A person or governmental
340entity that provides information to the department pursuant to this section shall not be held liable
341in a civil or criminal action for sharing confidential information unless the person or organization
342has done so in bad faith or with malicious purpose.
343 (i) For the purposes of this section, the following words shall, unless the context clearly
344requires otherwise, have the following meanings:-
345 “Sickle cell disease and its variants”, an inherited disease caused by a mutation in a gene
346for hemoglobin in which red blood cells have an abnormal crescent shape that causes them to
347block small blood cells and die sooner than normal.
348 SCD REGISTRY AND REPORTS- DATA COLLECTION ON SCD TRAIT
349 SECTION 6. (a)(1) Notwithstanding any general or special law to the contrary, if a
350newborn screening for hereditary disorders performed pursuant to section 270.006(A)(2)(e) of
351chapter 105, Code of Massachusetts Regulations detects the presence of sickle cell trait, the
352laboratory performing the screening shall notify the physician responsible for the newborn’s care
353and shall document the patient’s information in the central registry established pursuant to
354paragraph (2) in a manner and on forms prescribed by the department of public health. 19 of 23
355 (2) The physician responsible for such newborn’s care shall provide the patient’s parents
356with information concerning the availability, benefits, and role of genetic counseling performed
357by a genetic counselor licensed pursuant to section 253 of chapter 112 of the General Laws,
358including a document available in multiple languages (as determined by the department) that
359identifies at least 10 genetic counselors and the public health care payers and private health care
360payers which contract with each such genetic counselor. In the case a physician described in the
361preceding sentence is not identified, the laboratory described in paragraph (1) shall provide the
362patient’s parents with such information relating to genetic counseling. Genetic counseling
363concerning a diagnosis of sickle cell trait shall include, but not be limited to, information
364concerning the fact that one or both of the parents carries sickle cell trait and the risk that other
365children born to the parents may carry sickle cell trait or may be born with sickle cell disease.
366 (b)(1) The commissioner of public health shall establish a central registry of patients
367diagnosed with sickle cell trait. The information in the central registry shall be used for the
368purposes of compiling statistical information and assisting the provision of follow-up counseling,
369intervention, and educational services to patients and to the parents of patients who are listed in
370the registry including, but not limited to, information concerning the availability and benefits of
371genetic counseling performed by a genetic counselor licensed pursuant to section 253 of chapter
372112 of the General Laws.
373 (2) The commissioner shall establish a system to notify the parents of patients who are
374listed in the registry that follow-up consultations with a physician are recommended for children
375diagnosed with sickle cell trait. Such notifications shall be provided: at least once when the
376patient is in early adolescence, when the patient may begin to participate in strenuous athletic
377activities that could result in adverse symptoms for a person with sickle cell trait; at least once 20 of 23
378during later adolescence, when the patient should be made aware of the reproductive
379implications of sickle cell trait; and at such other intervals as the commissioner may require.
380 (3) The commissioner shall establish a system under which the department shall make
381reasonable efforts to notify patients listed in the registry who reach the age of 18 years of the
382patient’s inclusion in the registry and of the availability of educational services, genetic
383counseling, and other resources that may be beneficial to the patient.
384 (4) Information on newborn infants and their families compiled pursuant to this section
385may be used by the department and agencies designated by the commissioner of public health for
386the purposes of carrying out this act, but otherwise the information shall not be a public record
387and shall be confidential and not divulged or made public so as to disclose the identity of any
388person to whom it relates, except as exempted or consented in accordance with section 10 of
389chapter 66 or section 70G of chapter 111 of the General Laws, respectively.
390 DEVELOPMENT OF A COMPREHENSIVE SCD DISEASE QUALITY STRATEGY
391IN MEDICAID MANAGED CARE
392 SECTION 7. (a) Notwithstanding any general or special law to the contrary, the division
393of medical assistance shall ensure the availability of accessible, quality health care for
394individuals with sickle cell disease who are enrolled in Medicaid managed care organizations or
395accountable care organizations that have a contract with the division to provide services to
396individuals enrolled under MassHealth pursuant to section 9 of chapter 118E of the General
397Laws. Such health care shall include, but not be limited to the following:
398 (1) comprehensive integrated care management for sickle cell disease, including primary
399care, specialized care, and mental health services; 21 of 23
400 (2) sickle cell trait testing and genetic counseling;
401 (3) social work services as well as education on disease management to patients,
402caregivers, and providers; and
403 (4) support navigating health insurance coverage and support with transportation to
404treatment centers.
405 (b) Not later than the fiscal year 2024 contract year, the division of medical assistance
406shall require Medicaid managed care or accountable care organizations to implement a sickle cell
407disease quality strategy for children and adults with sickle cell disease that includes, but is not
408limited to, the following components:
409 (1) measurable goals to improve the identification of members with sickle cell disease
410within 90 days after enrolling in the contracted health plan;
411 (2) to the extent practicable, adequate provider network capacity to ensure timely access
412to sickle cell disease specialty service providers, including, but not limited to, hematologists;
413 (3) care coordination strategies and supports to help members with sickle cell disease
414access sickle cell disease specialists and other related care supports;
415 (4) delivery of a training curriculum approved by the division of medical assistance to
416educate primary care providers on sickle cell disease, including information on emergency
417warning signs and complications, evidence-based practices and treatment guidelines, and when
418to make referrals to specialty sickle cell disease treatment providers; and
419 (5) in the case of an individual who is diagnosed with sick cell disease, exceptions to
420otherwise applicable prior authorization or dispensing limits for pain medications that are 22 of 23
421designed to reduce barriers for such an individual to be able to obtain the appropriate dosage and
422amount of a pain medication in a timely manner.
423 (c) The division of medical assistance shall also do the following:
424 (1) Not later than the fiscal year 2025 contract year, require each Medicaid managed care
425organization and accountable care organization to report, on a quarterly basis, an unduplicated
426count of children and adults identified as having sickle cell disease enrolled with the contracted
427plan during the quarter. The department shall publish these reports, by contracted plan, on the
428department's website.
429 (2) Not later than January 1, 2025, and in partnership with Medicaid managed care
430organizations and accountable care organizations, identify, document, and share best practices
431regarding sickle cell disease care management and care coordination with Medicaid-enrolled
432primary care and sickle cell disease specialty providers with a goal of improving services for
433members with sickle cell disease and their families.
434 (3) Enter into a contract not later than January 1, 2025, with a publicly funded university
435to develop a sickle cell disease-focused comprehensive assessment tool or a supplement to an
436existing comprehensive assessment tool to screen members identified with sickle cell disease for
437comorbidities, medical history for the treatment of sickle cell disease including disease-
438modifying medications and pain management, psychosocial history, barriers to accessing or
439completing treatments, social supports, other care coordinators working with the member,
440community resources being used or needed, quality of life, and personal preferences for
441engagement with a care coordinator. 23 of 23
442 (4) Not later than the fiscal year 2025 contract year, establish performance measures
443relative to access to care and available therapies, engagement in treatment, and outcomes for
444individuals with sickle cell disease, with the metrics to be reported annually by the
445comprehensive health care program to Medicaid managed care organizations and accountable
446care organizations and with incentive payments attached to the measures.
447 (5) Not later than January 1, 2025, develop a plan for improving the transition from
448pediatric care to adult care for adolescents with sickle cell disease who are aging out of the
449Medicaid program, and a plan for helping qualified beneficiaries maintain Medicaid coverage
450under another eligibility category, in order to maintain continuity of care.
451 (d) The division of medical assistance shall provide an annual sickle cell disease
452management and accountability report to the senate and house committees on ways and means,
453including the status of sickle cell disease-focused access to care, quality of services, health
454outcomes, and disparities in the commonwealth.
455 (e) The division of medical assistance shall incorporate the sickle cell disease
456management and accountability standards into its contracts with managed care plans and
457accountable care organizations, including financial or administrative penalties for lack of
458performance. Contracted plan rates must be adjusted to reflect enhanced care or other provisions
459that are shifted to the contracted plans.