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Massachusetts Senate Bill S2640

Massachusetts 2023-2024 Regular Session

Massachusetts Senate Bill S2640 Compare Versions

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11 SENATE . . . . . . . . . . . . . . No. 2640
22 The Commonwealth of Massachusetts
33 _______________
44 In the One Hundred and Ninety-Third General Court
55 (2023-2024)
66 _______________
77 SENATE, March 14, 2024.
88 The committee on Financial Services, to whom was referred the petitions (accompanied
99 by bill, Senate, No. 678) of Liz Miranda and Lydia Edwards for legislation to improve sickle cell
1010 care, report the accompanying bill (Senate, No. 2640).
1111 For the committee,
1212 Paul R. Feeney 1 of 20
1313 FILED ON: 2/7/2024
1414 SENATE . . . . . . . . . . . . . . No. 2640
1515 The Commonwealth of Massachusetts
1616 _______________
1717 In the One Hundred and Ninety-Third General Court
1818 (2023-2024)
1919 _______________
2020 An Act to improve sickle cell care.
2121 Be it enacted by the Senate and House of Representatives in General Court assembled, and by the authority
2222 of the same, as follows:
2323 1 SECTION 1. (a)(1) Notwithstanding any general or special law to the contrary, there is
2424 2hereby established a Statewide Steering Committee on Sickle Cell Disease within the department
2525 3of public health.
2626 4 (2) The Steering Committee under this section shall consist of:
2727 5 (A) two representatives from the Massachusetts Sickle Cell Disease Association
2828 6including the Executive Director or their designee;
2929 7 (B) three medical professionals from major Sickle Cell Disease treatment centers in the
3030 8commonwealth who shall be appointed by the commissioner;
3131 9 (C) the Executive Director of the Massachusetts Association of Community Health
3232 10Workers or their designee;
3333 11 (D) the President of the Massachusetts Chapter of the National Association of Social
3434 12Workers or their designee; 2 of 20
3535 13 (E) two members who shall be appointed by the commissioner, one of whom shall be an
3636 14expert on the biology of the disease, and one of whom shall be an expert on the psycho-social
3737 15aspect of the disease;
3838 16 (F) two representatives of the department of elementary and secondary education who
3939 17shall be appointed by the commissioner, including one of whom is knowledgeable about the right
4040 18to comparable education, supportive services and accommodations under section 504 of the
4141 19Rehabilitation Act of 1973;
4242 20 (G) one representative of the Black and Latino Caucus who shall be appointed by the
4343 21commissioner;
4444 22 (H) one representative of the Asian Caucus who shall be appointed by the commissioner;
4545 23 (I) two sickle cell disease patients who shall be appointed by the Governor, one of which
4646 24shall be over 25 years in age and the other shall be between 18 and 25 years in age;
4747 25 (J) a parent of a minor child with sickle cell disease who shall be appointed by the
4848 26Governor;
4949 27 (K) a parent of a secondary or post-secondary school age youth with sickle cell disease
5050 28who shall be appointed by the commissioner; and
5151 29 (L) one representative who has a background in racial health disparities who shall be
5252 30appointed by the Governor.
5353 31 The representatives of nongovernmental organizations shall serve staggered 3–year
5454 32terms. Vacancies of unexpired terms shall be filled within 60 days by the appropriate appointing
5555 33authority. 3 of 20
5656 34 (3) The Steering Committee under this section shall:
5757 35 (A) establish institution and community partnerships, including hospitals, and institutions
5858 36of higher education;
5959 37 (B) establish a statewide network of stakeholders, including parents, home health care
6060 38providers, school-based nurses, and the Massachusetts Sickle Cell Disease Association who are
6161 39committed to care for individuals with sickle cell disease collaboratively in an inclusive setting;
6262 40 (C) establish a statewide network of racially and culturally competent stakeholders who
6363 41include general and special education administrators and teachers and paraprofessionals;
6464 42 (D) oversee the development of educational materials for individuals with sickle cell
6565 43disease, the public, and health care providers about the assistance available to such individuals in
6666 44the commonwealth, including local school district responsibilities for care of such individuals;
6767 45 (E) identify funding sources for implementing or supporting the actions, studies, policies
6868 46required by federal and state laws and regulations, or recommended by the Steering Committee,
6969 47including funding from:
7070 48 (i) state, federal, and local government sources; and
7171 49 (ii) private sources;
7272 50 (F) investigate and report on a standard of basic, multidisciplinary care for patients across
7373 51the commonwealth; and
7474 52 (G) establish subcommittees as appropriate. 4 of 20
7575 53 (4) The department may, in consultation with the Statewide Steering Committee, provide
7676 54services relating to sickle cell disease, including:
7777 55 (A) educational programs on sickle cell disease for individuals affected by the disease,
7878 56including:
7979 57 (i) education on the rights of individuals with sickle cell disease, such as, without
8080 58limitation, the right not to be discriminated against and the right to receive appropriate
8181 59educational programming, health related services and accommodations necessary to access such
8282 60programming and services;
8383 61 (ii) expectations, options, and responsibilities of families of individuals with sickle cell
8484 62disease;
8585 63 (iii) challenges and responsibilities of caregivers of individuals with sickle cell disease;
8686 64 (iv) obligations of employees at primary and secondary schools; and
8787 65 (v) challenges and responsibilities of health care providers;
8888 66 (B) social services support to individuals with sickle cell disease, including support from
8989 67social workers and community health workers to provide information on services that may be
9090 68available to the individual;
9191 69 (C) hemoglobin electrophoresis or genetic testing for the presence of sickle cell disease;
9292 70 (D) genetic counseling;
9393 71 (E) assistance with any available reimbursement for medical expenses related to sickle
9494 72cell disease; 5 of 20
9595 73 (F) education and counseling services for parents and other family members and
9696 74caretakers after the receipt of sickle cell trait test results from the Newborn Screening Program as
9797 75required by section 270.006(A)(2)(e) of chapter 105, Code of Massachusetts Regulations,
9898 76provided that, with the consent of parents and other family members and caretakers, such
9999 77services may be provided in whole or in part by the Massachusetts Sickle Cell Disease
100100 78Association; and
101101 79 (G) any other programs or services that are necessary to decrease the use of acute care
102102 80services by individuals who have sickle cell disease.
103103 81 (5) The department shall, in consultation with any other agency of the commonwealth as
104104 82the department determines appropriate, provide the services in paragraph (4) through
105105 83community–based organizations, including specifically, pre-K, elementary and secondary
106106 84schools as well as institutions for higher education for all affected school-age children, youth,
107107 85and older students to the extent practicable.
108108 86 (6) The Steering Committee, in conjunction with the department and other relevant
109109 87stakeholders, shall study and make recommendations on:
110110 88 (A) how to enhance access to services for individuals with sickle cell disease with a focus
111111 89on areas in the commonwealth where there is a statistically high number of individuals with
112112 90sickle cell disease or in areas where there is a lack of providers with expertise in treating sickle
113113 91cell disease;
114114 92 (B) whether to establish a sickle cell disease registry, and if recommended, the process
115115 93and guidelines for establishing a registry and obtaining information consistent with informed
116116 94consent and protecting data privacy; 6 of 20
117117 95 (C) how to enhance the coordination of health care services for individuals with sickle
118118 96cell disease who are transitioning from pediatric to adult health care, including the identification
119119 97of available resources for individuals who are transitioning; and
120120 98 (D) how to engage with community–based health fairs and other community–sponsored
121121 99events in areas with a statistically high number of individuals with sickle cell disease to provide
122122 100outreach and education on living with sickle cell disease and how to access health care services.
123123 101 (b) The department shall, in consultation with the Steering Committee, establish and
124124 102implement a system the provides information on the sickle cell trait to any individual who has
125125 103the sickle cell trait and, if the individual is a minor, to the individual’s family.
126126 104 (c) The department shall include the following in the information provided under
127127 105subsection (b):
128128 106 (1) how the sickle cell trait impacts the health of an individual with the trait;
129129 107 (2) how the sickle cell trait is passed from a parent to a child; and
130130 108 (3) implications for pregnancy.
131131 109 (d) The department shall maintain in a conspicuous location on its website a list of
132132 110resources for health care practitioners to use to improve their understanding and clinical
133133 111treatment of individuals with sickle cell disease or the sickle cell trait, including information on
134134 112the health impacts of carrying the sickle cell trait.
135135 113 (e) For the purposes of this section, the following word shall, unless the context clearly
136136 114requires otherwise, have the following meaning:- 7 of 20
137137 115 “Steering Committee”, the Statewide Steering Committee on Sickle Cell Disease.
138138 116 SECTION 2. (a) Notwithstanding any general or special law to the contrary, there is
139139 117hereby established within the department of public health the sickle cell disease detection and
140140 118education program to: (1) promote screening and detection of sickle cell disease, especially
141141 119among unserved or underserved populations; (2) educate the public regarding sickle cell disease
142142 120and the benefits of early detection; and (3) provide counseling and referral services.
143143 121 (b) The program under this section shall include:
144144 122 (1) establishment of a statewide public education and outreach campaign to publicize
145145 123evidence-based sickle cell disease screening, detection and education services. The campaign
146146 124shall include: general community education, outreach to specific underserved populations,
147147 125evidence based clinical sickle cell disease screening services, and an informational summary that
148148 126shall include an explanation of the importance of clinical examinations and what to expect during
149149 127clinical examinations and sickle cell disease screening services;
150150 128 (2) provision of grants to approved organizations pursuant to subsection (c) and for
151151 129community based organizations pursuant to subsection (d);
152152 130 (3) compilation of data concerning the program and dissemination of such data to the
153153 131public; and
154154 132 (4) development of health care professional education programs including the benefits of
155155 133early detection of sickle cell disease and clinical examinations, the recommended frequency of
156156 134clinical examinations and sickle cell disease screening services, and professionally recognized
157157 135best practices guidelines. 8 of 20
158158 136 (c)(1) Under the program, the commissioner of public health shall make grants in
159159 137amounts appropriated to approved organizations for the provision of services relating to the
160160 138evidence-based screening and detection of sickle cell disease as part of this program. The
161161 139services required to be provided under such grants shall include:
162162 140 (A) promotion and provision of early detection of sickle cell disease, including clinical
163163 141examinations and sickle cell disease screening services;
164164 142 (B) provision of counseling and information on treatment options and referral for
165165 143appropriate medical treatment;
166166 144 (C) dissemination of information to unserved and underserved populations as determined
167167 145by the commissioner, to the general public and to health care professionals concerning sickle cell
168168 146disease, the benefits of early detection and treatment, and the availability of sickle cell disease
169169 147screening services at no cost to such populations;
170170 148 (D) identification of local sickle cell disease screening services within the approved
171171 149organization's region;
172172 150 (E) provision of information, counseling and referral services to individuals diagnosed
173173 151with sickle cell disease; and
174174 152 (F) provision of information regarding the availability of medical assistance, including
175175 153medical assistance for an individual who is eligible for such assistance pursuant to section 9 of
176176 154chapter 118E of the General Laws, to an individual who requires treatment for sickle cell
177177 155disease. 9 of 20
178178 156 (2) The commissioner shall give notice and provide opportunity to submit applications
179179 157for grants under the program. In order to be considered for a grant, an applicant must show
180180 158evidence of the following, relating to the services the applicant proposes to provide:
181181 159 (A) ability to provide and to ensure consistent and quality services under the program;
182182 160 (B) expertise in providing the service;
183183 161 (C) capacity to coordinate services with physicians, hospitals and other appropriate local
184184 162institutions or agencies;
185185 163 (D) ability to provide the service to unserved or underserved populations; and
186186 164 (E) ability to provide the service in accordance with the standards specified in
187187 165subdivision three of this section.
188188 166 Applications shall be made on forms provided by the commissioner.
189189 167 (3) The commissioner shall develop standards for the implementation of grants under the
190190 168program by approved organizations, which shall ensure the following:
191191 169 (A) integration of the approved organization with existing health care providers;
192192 170 (B) maximizing third party reimbursement; and
193193 171 (C) provision of services to unserved or underserved populations.
194194 172 (4) Within the amounts of state or federal funds appropriated for the program, approved
195195 173organizations may be authorized by the department to provide such services for populations 10 of 20
196196 174served under this title. Services may include evidence based screening, patient education,
197197 175counseling, follow-up and referral.
198198 176 (5) Every organization receiving grants under this subsection shall submit to the
199199 177commissioner, on or before October first of each year, a report of such organization's activities,
200200 178including an assessment of the organization's programs and such data as the commissioner deems
201201 179relevant and necessary to accomplish the purposes of the program
202202 180 (d)(1) Under the program, the commissioner shall make grants within amounts
203203 181appropriated for community based organizations to provide post-diagnosis counseling, education
204204 182and outreach programs for persons diagnosed with sickle cell disease based upon criteria to be
205205 183developed by the commissioner.
206206 184 (2) The commissioner shall provide notice and opportunity for community-based
207207 185organizations to submit applications to provide post-diagnosis sickle cell disease counseling,
208208 186education and outreach programs. Such applications shall be on forms established by the
209209 187commissioner.
210210 188 (e) The commissioner shall submit, on or before December first of each year, an annual
211211 189report to the governor and the legislature concerning the operation of the program. The reports
212212 190shall include the experience of the program in providing services under this act. The annual
213213 191report shall include strategies for implementation of the sickle cell disease awareness program
214214 192and for promoting the awareness program to the general public, state and local elected officials,
215215 193and various public and private organizations, associations, businesses, industries, and agencies.
216216 194Organizations receiving grants under this act shall provide data and assessments as the 11 of 20
217217 195commissioner may require for the report. The report shall include any recommendations for
218218 196additional action to respond to the incidence of sickle cell disease in the commonwealth.
219219 197 (f) For the purposes of this section, the following words shall, unless the context clearly
220220 198requires otherwise, have the following meanings:-
221221 199 “Community-based organizations”, free-standing organizations in which sickle cell
222222 200disease survivors hold significant decision-making responsibility, and which offer a broad range
223223 201of sickle cell disease education and support services free of charge.
224224 202 “Program”, sickle cell disease detection and education program.
225225 203 “Unserved or underserved populations", people having inadequate access and financial
226226 204resources to obtain sickle cell disease screening and detection services, including people who
227227 205lack health coverage or whose health coverage is inadequate or who cannot meet the financial
228228 206requirements of their coverage for accessing detection services.
229229 207 SECTION 3. (a)(1) Notwithstanding any general or special law to the contrary, the
230230 208commissioner of public health or designee shall, in accordance with regulations adopted by the
231231 209department of public health pursuant to subsection (b), and in consultation with the
232232 210Massachusetts Sickle Cell Disease Association, establish and maintain a system for the reporting
233233 211of information on sickle cell disease and its variants. Said system shall include a record of the
234234 212cases of sickle cell disease and its variants which occur in the commonwealth along with such
235235 213information concerning the cases as may be appropriate to form the basis for: (A) conducting
236236 214comprehensive epidemiologic surveys of sickle cell disease and its variants in the
237237 215commonwealth; and (B) evaluating the appropriateness of measures for the treatment of sickle
238238 216cell disease and its variants. 12 of 20
239239 217 (2) Hospitals, medical laboratories, and other facilities that provide screening, diagnostic
240240 218or therapeutic services to patients with respect to sickle cell disease and its variants shall report
241241 219the information prescribed by the regulation promulgated pursuant to subsection (b).
242242 220 (3) Any provider of health care who diagnoses or provides treatment for sickle cell
243243 221disease and its variants, except for cases directly referred to the provider or cases that have been
244244 222previously admitted to a hospital, medical laboratory or other facility described in paragraph (2),
245245 223shall report the information prescribed by the regulation adopted pursuant to subsection (b).
246246 224 (b) The department of public health shall, by regulation:
247247 225 (1) prescribe the form and manner in which information on cases of sickle cell disease
248248 226and its variants must be reported in compliance with any applicable federal privacy law;
249249 227 (2) prescribe the information that must be included in each report, which must include,
250250 228without limitation: (A) the name, address, age and ethnicity of the patient; (B) the variant of
251251 229sickle cell disease with which the person has been diagnosed; (C) the method of treatment; (D)
252252 230any other diseases from which the patient suffers; (E) information concerning the usage of and
253253 231access to health care services by the patient; and (F) if a patient diagnosed with sickle cell
254254 232disease and its variants dies, his or her age at death and cause of death; and
255255 233 (3) establish a protocol for allowing appropriate access to and preserving the
256256 234confidentiality of the records of patients needed for research into sickle cell disease and its
257257 235variants;
258258 236 (4) establish a protocol for allowing information, in accordance with the preceding
259259 237subsections, to be communicated with Statewide Steering Committee on Sickle Cell Disease, the 13 of 20
260260 238sickle cell disease services program, and within the department as determined appropriate by the
261261 239commissioner.
262262 240 (c) The chief administrative officer of each health care facility in the commonwealth shall
263263 241make available to the commissioner or designee the records of the health care facility for each
264264 242case of sickle cell disease and its variants. The department of public health shall abstract from
265265 243the records of a health care facility or shall require a health care facility to abstract from its own
266266 244records such information as is required by regulations promulgated pursuant to subsection (b).
267267 245The department shall compile the information in a timely manner and not later than 6 months
268268 246after receipt of the abstracted information from the health care facility. The department shall by
269269 247regulation adopt a schedule of fees which must be assessed to a health care facility for each case
270270 248from which information is abstracted by the department. Any person who violates this section is
271271 249subject to an administrative penalty established by regulation by the department.
272272 250 (d) The department shall publish reports based upon the information obtained pursuant to
273273 251subsections (a), (b), and (c) and shall make other appropriate uses of the information to report
274274 252and assess trends in the usage of and access to health care services by patients with sickle cell
275275 253disease and its variants in a particular area or population, advance research and education
276276 254concerning sickle cell disease and its variants and improve treatment of sickle cell disease and its
277277 255variants and associated disorders. The reports must include, without limitation:
278278 256 (1) information concerning the locations in which patients diagnosed with sickle cell
279279 257disease and its variants reside, the demographics of such patients and the utilization of health
280280 258care services by such patients; 14 of 20
281281 259 (2) the information described in paragraph (1), specific to patients diagnosed with sickle
282282 260cell disease and its variants who are over 60 years of age or less than 5 years of age; and
283283 261 (3) information on the transition of patients diagnosed with sickle cell disease and its
284284 262variants from pediatric to adult care upon reaching 18 years of age.
285285 263 (e) The department shall provide any qualified researcher whom the department
286286 264determines is conducting valid scientific research with data from the reported information upon
287287 265the researcher’s: (1) compliance with appropriate conditions as established under the regulations
288288 266of the department; and (2) payment of a fee established by the department by regulation to cover
289289 267the cost of providing the data.
290290 268 (f) The commissioner or designee shall analyze the information obtained pursuant to
291291 269subsections (a), (b) and (c) and the reports published pursuant to subsection (d) to determine
292292 270whether any trends exist in the usage of and access to health care services by patients with sickle
293293 271cell disease and its variants in a particular area or population.
294294 272 (g) If the commissioner or designee determines that a trend exists in the usage of and
295295 273access to health care services by patients with sickle cell disease and its variants in a particular
296296 274area or population, the commissioner or designee shall work with appropriate governmental,
297297 275educational and research entities to investigate the trend, advance research in the trend and
298298 276facilitate the treatment of sickle cell disease and its variants and associated disorders.
299299 277 (h) The department shall not reveal the identity of any patient, physician, or health care
300300 278facility which is involved in any reporting required by this section unless the patient, physician
301301 279or health care facility gives prior written consent to such a disclosure. A person or governmental
302302 280entity that provides information to the department pursuant to this section shall not be held liable 15 of 20
303303 281in a civil or criminal action for sharing confidential information unless the person or organization
304304 282has done so in bad faith or with malicious purpose.
305305 283 (i) For the purposes of this section, the following words shall, unless the context clearly
306306 284requires otherwise, have the following meanings:-
307307 285 “Sickle cell disease and its variants”, an inherited disease caused by a mutation in a gene
308308 286for hemoglobin in which red blood cells have an abnormal crescent shape that causes them to
309309 287block small blood cells and die sooner than normal.
310310 288 SECTION 4. (a)(1) Notwithstanding any general or special law to the contrary, if a
311311 289newborn screening for hereditary disorders performed pursuant to section 270.006(A)(2)(e) of
312312 290chapter 105, Code of Massachusetts Regulations detects the presence of sickle cell trait, the
313313 291laboratory performing the screening shall notify the physician responsible for the newborn’s care
314314 292and shall document the patient’s information in the central registry established pursuant to
315315 293paragraph (2) in a manner and on forms prescribed by the department of public health.
316316 294 (2) The physician responsible for such newborn’s care shall provide the patient’s parents
317317 295with information concerning the availability, benefits, and role of genetic counseling performed
318318 296by a genetic counselor licensed pursuant to section 253 of chapter 112 of the General Laws,
319319 297including a document available in multiple languages (as determined by the department) that
320320 298identifies at least 10 genetic counselors and the public health care payers and private health care
321321 299payers which contract with each such genetic counselor. In the case a physician described in the
322322 300preceding sentence is not identified, the laboratory described in paragraph (1) shall provide the
323323 301patient’s parents with such information relating to genetic counseling. Genetic counseling
324324 302concerning a diagnosis of sickle cell trait shall include, but not be limited to, information 16 of 20
325325 303concerning the fact that one or both of the parents carries sickle cell trait and the risk that other
326326 304children born to the parents may carry sickle cell trait or may be born with sickle cell disease.
327327 305 (b)(1) The commissioner of public health shall establish a central registry of patients
328328 306diagnosed with sickle cell trait. The information in the central registry shall be used for the
329329 307purposes of compiling statistical information and assisting the provision of follow-up counseling,
330330 308intervention, and educational services to patients and to the parents of patients who are listed in
331331 309the registry including, but not limited to, information concerning the availability and benefits of
332332 310genetic counseling performed by a genetic counselor licensed pursuant to section 253 of chapter
333333 311112 of the General Laws.
334334 312 (2) The commissioner shall establish a system to notify the parents of patients who are
335335 313listed in the registry that follow-up consultations with a physician are recommended for children
336336 314diagnosed with sickle cell trait. Such notifications shall be provided: at least once when the
337337 315patient is in early adolescence, when the patient may begin to participate in strenuous athletic
338338 316activities that could result in adverse symptoms for a person with sickle cell trait; at least once
339339 317during later adolescence, when the patient should be made aware of the reproductive
340340 318implications of sickle cell trait; and at such other intervals as the commissioner may require.
341341 319 (3) The commissioner shall establish a system under which the department shall make
342342 320reasonable efforts to notify patients listed in the registry who reach the age of 18 years of the
343343 321patient’s inclusion in the registry and of the availability of educational services, genetic
344344 322counseling, and other resources that may be beneficial to the patient.
345345 323 (4) Information on newborn infants and their families compiled pursuant to this section
346346 324may be used by the department and agencies designated by the commissioner of public health for 17 of 20
347347 325the purposes of carrying out this act, but otherwise the information shall not be a public record
348348 326and shall be confidential and not divulged or made public so as to disclose the identity of any
349349 327person to whom it relates, except as exempted or consented in accordance with section 10 of
350350 328chapter 66 or section 70G of chapter 111 of the General Laws, respectively.
351351 329 SECTION 5. (a) Notwithstanding any general or special law to the contrary, the division
352352 330of medical assistance shall ensure the availability of accessible, quality health care for
353353 331individuals with sickle cell disease who are enrolled in Medicaid managed care organizations or
354354 332accountable care organizations that have a contract with the division to provide services to
355355 333individuals enrolled under MassHealth pursuant to section 9 of chapter 118E of the General
356356 334Laws. Such health care shall include, but not be limited to the following:
357357 335 (1) comprehensive integrated care management for sickle cell disease, including primary
358358 336care, specialized care, and mental health services;
359359 337 (2) sickle cell trait testing and genetic counseling;
360360 338 (3) social work services as well as education on disease management to patients,
361361 339caregivers, and providers; and
362362 340 (4) support navigating health insurance coverage and support with transportation to
363363 341treatment centers.
364364 342 (b) Not later than the fiscal year 2024 contract year, the division of medical assistance
365365 343shall require Medicaid managed care or accountable care organizations to implement a sickle cell
366366 344disease quality strategy for children and adults with sickle cell disease that includes, but is not
367367 345limited to, the following components: 18 of 20
368368 346 (1) measurable goals to improve the identification of members with sickle cell disease
369369 347within 90 days after enrolling in the contracted health plan;
370370 348 (2) to the extent practicable, adequate provider network capacity to ensure timely access
371371 349to sickle cell disease specialty service providers, including, but not limited to, hematologists;
372372 350 (3) care coordination strategies and supports to help members with sickle cell disease
373373 351access sickle cell disease specialists and other related care supports;
374374 352 (4) delivery of a training curriculum approved by the division of medical assistance to
375375 353educate primary care providers on sickle cell disease, including information on emergency
376376 354warning signs and complications, evidence-based practices and treatment guidelines, and when
377377 355to make referrals to specialty sickle cell disease treatment providers; and
378378 356 (5) in the case of an individual who is diagnosed with sick cell disease, exceptions to
379379 357otherwise applicable prior authorization or dispensing limits for pain medications that are
380380 358designed to reduce barriers for such an individual to be able to obtain the appropriate dosage and
381381 359amount of a pain medication in a timely manner.
382382 360 (c) The division of medical assistance shall also do the following:
383383 361 (1) Not later than the fiscal year 2025 contract year, require each Medicaid managed care
384384 362organization and accountable care organization to report, on a quarterly basis, an unduplicated
385385 363count of children and adults identified as having sickle cell disease enrolled with the contracted
386386 364plan during the quarter. The department shall publish these reports, by contracted plan, on the
387387 365department's website. 19 of 20
388388 366 (2) Not later than January 1, 2025, and in partnership with Medicaid managed care
389389 367organizations and accountable care organizations, identify, document, and share best practices
390390 368regarding sickle cell disease care management and care coordination with Medicaid-enrolled
391391 369primary care and sickle cell disease specialty providers with a goal of improving services for
392392 370members with sickle cell disease and their families.
393393 371 (3) Enter into a contract not later than January 1, 2025, with a publicly funded university
394394 372to develop a sickle cell disease-focused comprehensive assessment tool or a supplement to an
395395 373existing comprehensive assessment tool to screen members identified with sickle cell disease for
396396 374comorbidities, medical history for the treatment of sickle cell disease including disease-
397397 375modifying medications and pain management, psychosocial history, barriers to accessing or
398398 376completing treatments, social supports, other care coordinators working with the member,
399399 377community resources being used or needed, quality of life, and personal preferences for
400400 378engagement with a care coordinator.
401401 379 (4) Not later than the fiscal year 2025 contract year, establish performance measures
402402 380relative to access to care and available therapies, engagement in treatment, and outcomes for
403403 381individuals with sickle cell disease, with the metrics to be reported annually by the
404404 382comprehensive health care program to Medicaid managed care organizations and accountable
405405 383care organizations and with incentive payments attached to the measures.
406406 384 (5) Not later than January 1, 2025, develop a plan for improving the transition from
407407 385pediatric care to adult care for adolescents with sickle cell disease who are aging out of the
408408 386Medicaid program, and a plan for helping qualified beneficiaries maintain Medicaid coverage
409409 387under another eligibility category, in order to maintain continuity of care. 20 of 20
410410 388 (d) The division of medical assistance shall provide an annual sickle cell disease
411411 389management and accountability report to the senate and house committees on ways and means,
412412 390including the status of sickle cell disease-focused access to care, quality of services, health
413413 391outcomes, and disparities in the commonwealth.
414414 392 (e) The division of medical assistance shall incorporate the sickle cell disease
415415 393management and accountability standards into its contracts with managed care plans and
416416 394accountable care organizations, including financial or administrative penalties for lack of
417417 395performance. Contracted plan rates must be adjusted to reflect enhanced care or other provisions
418418 396that are shifted to the contracted plans.