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Massachusetts Senate Bill S2879

Massachusetts 2023-2024 Regular Session

Massachusetts Senate Bill S2879 Compare Versions

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22 SENATE . . . . . . . . . . . . . . No. 2879
33 Senate, July 17, 2024 -- Text of amendment (36) (offered by Senator Miranda) to the Ways and
44 Means amendment (Senate, No. 2871) to the Senate Bill relative to health care market review
55 The Commonwealth of Massachusetts
66 _______________
77 In the One Hundred and Ninety-Third General Court
88 (2023-2024)
99 _______________
1010 1 by adding the following sections:-
1111 2 "SECTION XX. (a) (1) Notwithstanding any general or special law to the contrary, there
1212 3is hereby established a Statewide Steering Committee on Sickle Cell Disease within the
1313 4department of public health.
1414 5 (2) The Steering Committee under this section shall consist of:
1515 6 (A) two representatives from the Massachusetts Sickle Cell Disease Association
1616 7including the Executive Director or their designee;
1717 8 (B) three medical professionals from major Sickle Cell Disease treatment centers in the
1818 9commonwealth who shall be appointed by the commissioner;
1919 10 (C) the Executive Director of the Massachusetts Association of Community Health
2020 11Workers or their designee;
2121 12 (D) the President of the Massachusetts Chapter of the National Association of Social
2222 13Workers or their designee; 2 of 20
2323 14 (E) two members who shall be appointed by the commissioner, one of whom shall be an
2424 15expert on the biology of the disease, and one of whom shall be an expert on the psycho-social
2525 16aspect of the disease;
2626 17 (F) two representatives of the department of elementary and secondary education who
2727 18shall be appointed by the commissioner, including one of whom is knowledgeable about the right
2828 19to comparable education, supportive services and accommodations under section 504 of the
2929 20Rehabilitation Act of 1973;
3030 21 (G) one representative of the Black and Latino Caucus who shall be appointed by the
3131 22commissioner;
3232 23 (H) one representative of the Asian Caucus who shall be appointed by the commissioner;
3333 24 (I) two sickle cell disease patients who shall be appointed by the Governor, one of which
3434 25shall be over 25 years in age and the other shall be between 18 and 25 years in age;
3535 26 (J) a parent of a minor child with sickle cell disease who shall be appointed by the
3636 27Governor;
3737 28 (K) a parent of a secondary or post-secondary school age youth with sickle cell disease
3838 29who shall be appointed by the commissioner; and
3939 30 (L) one representative who has a background in racial health disparities who shall be
4040 31appointed by the Governor.
4141 32 The representatives of nongovernmental organizations shall serve staggered 3–year
4242 33terms. Vacancies of unexpired terms shall be filled within 60 days by the appropriate appointing
4343 34authority. 3 of 20
4444 35 (3) The Steering Committee under this section shall:
4545 36 (A) establish institution and community partnerships, including hospitals, and institutions
4646 37of higher education;
4747 38 (B) establish a statewide network of stakeholders, including parents, home health care
4848 39providers, school-based nurses, and the Massachusetts Sickle Cell Disease Association who are
4949 40committed to care for individuals with sickle cell disease collaboratively in an inclusive setting;
5050 41 (C) establish a statewide network of racially and culturally competent stakeholders who
5151 42include general and special education administrators and teachers and paraprofessionals;
5252 43 (D) oversee the development of educational materials for individuals with sickle cell
5353 44disease, the public, and health care providers about the assistance available to such individuals in
5454 45the commonwealth, including local school district responsibilities for care of such individuals;
5555 46 (E) identify funding sources for implementing or supporting the actions, studies, policies
5656 47required by federal and state laws and regulations, or recommended by the Steering Committee,
5757 48including funding from:
5858 49 (i) state, federal, and local government sources; and
5959 50 (ii) private sources;
6060 51 (F) investigate and report on a standard of basic, multidisciplinary care for patients across
6161 52the commonwealth; and
6262 53 (G) establish subcommittees as appropriate. 4 of 20
6363 54 (4) The department may, in consultation with the Statewide Steering Committee, provide
6464 55services relating to sickle cell disease, including:
6565 56 (A) educational programs on sickle cell disease for individuals affected by the disease,
6666 57including:
6767 58 (i) education on the rights of individuals with sickle cell disease, such as, without
6868 59limitation, the right not to be discriminated against and the right to receive appropriate
6969 60educational programming, health related services and accommodations necessary to access such
7070 61programming and services;
7171 62 (ii) expectations, options, and responsibilities of families of individuals with sickle cell
7272 63disease;
7373 64 (iii) challenges and responsibilities of caregivers of individuals with sickle cell disease;
7474 65 (iv) obligations of employees at primary and secondary schools; and
7575 66 (v) challenges and responsibilities of health care providers;
7676 67 (B) social services support to individuals with sickle cell disease, including support from
7777 68social workers and community health workers to provide information on services that may be
7878 69available to the individual;
7979 70 (C) hemoglobin electrophoresis or genetic testing for the presence of sickle cell disease;
8080 71 (D) genetic counseling;
8181 72 (E) assistance with any available reimbursement for medical expenses related to sickle
8282 73cell disease; 5 of 20
8383 74 (F) education and counseling services for parents and other family members and
8484 75caretakers after the receipt of sickle cell trait test results from the Newborn Screening Program as
8585 76required by section 270.006(A)(2)(e) of chapter 105, Code of Massachusetts Regulations,
8686 77provided that, with the consent of parents and other family members and caretakers, such
8787 78services may be provided in whole or in part by the Massachusetts Sickle Cell Disease
8888 79Association; and
8989 80 (G) any other programs or services that are necessary to decrease the use of acute care
9090 81services by individuals who have sickle cell disease.
9191 82 (5) The department shall, in consultation with any other agency of the commonwealth as
9292 83the department determines appropriate, provide the services in paragraph (4) through
9393 84community–based organizations, including specifically, pre-K, elementary and secondary
9494 85schools as well as institutions for higher education for all affected school-age children, youth,
9595 86and older students to the extent practicable.
9696 87 (6) The Steering Committee, in conjunction with the department and other relevant
9797 88stakeholders, shall study and make recommendations on:
9898 89 (A) how to enhance access to services for individuals with sickle cell disease with a focus
9999 90on areas in the commonwealth where there is a statistically high number of individuals with
100100 91sickle cell disease or in areas where there is a lack of providers with expertise in treating sickle
101101 92cell disease;
102102 93 (B) whether to establish a sickle cell disease registry, and if recommended, the process
103103 94and guidelines for establishing a registry and obtaining information consistent with informed
104104 95consent and protecting data privacy; 6 of 20
105105 96 (C) how to enhance the coordination of health care services for individuals with sickle
106106 97cell disease who are transitioning from pediatric to adult health care, including the identification
107107 98of available resources for individuals who are transitioning; and
108108 99 (D) how to engage with community–based health fairs and other community–sponsored
109109 100events in areas with a statistically high number of individuals with sickle cell disease to provide
110110 101outreach and education on living with sickle cell disease and how to access health care services.
111111 102 (b) The department shall, in consultation with the Steering Committee, establish and
112112 103implement a system the provides information on the sickle cell trait to any individual who has
113113 104the sickle cell trait and, if the individual is a minor, to the individual’s family.
114114 105 (c) The department shall include the following in the information provided under
115115 106subsection (b):
116116 107 (1) how the sickle cell trait impacts the health of an individual with the trait;
117117 108 (2) how the sickle cell trait is passed from a parent to a child; and
118118 109 (3) implications for pregnancy.
119119 110 (d) The department shall maintain in a conspicuous location on its website a list of
120120 111resources for health care practitioners to use to improve their understanding and clinical
121121 112treatment of individuals with sickle cell disease or the sickle cell trait, including information on
122122 113the health impacts of carrying the sickle cell trait.
123123 114 (e) For the purposes of this section, the following word shall, unless the context clearly
124124 115requires otherwise, have the following meaning:- 7 of 20
125125 116 “Steering Committee”, the Statewide Steering Committee on Sickle Cell Disease.
126126 117 SECTION XX. (a) Notwithstanding any general or special law to the contrary, there is
127127 118hereby established within the department of public health the sickle cell disease detection and
128128 119education program to: (1) promote screening and detection of sickle cell disease, especially
129129 120among unserved or underserved populations; (2) educate the public regarding sickle cell disease
130130 121and the benefits of early detection; and (3) provide counseling and referral services.
131131 122 (b) The program under this section shall include:
132132 123 (1) establishment of a statewide public education and outreach campaign to publicize
133133 124evidence-based sickle cell disease screening, detection and education services. The campaign
134134 125shall include: general community education, outreach to specific underserved populations,
135135 126evidence based clinical sickle cell disease screening services, and an informational summary that
136136 127shall include an explanation of the importance of clinical examinations and what to expect during
137137 128clinical examinations and sickle cell disease screening services;
138138 129 (2) provision of grants to approved organizations pursuant to subsection (c) and for
139139 130community based organizations pursuant to subsection (d);
140140 131 (3) compilation of data concerning the program and dissemination of such data to the
141141 132public; and
142142 133 (4) development of health care professional education programs including the benefits of
143143 134early detection of sickle cell disease and clinical examinations, the recommended frequency of
144144 135clinical examinations and sickle cell disease screening services, and professionally recognized
145145 136best practices guidelines. 8 of 20
146146 137 (c)(1) Under the program, the commissioner of public health shall make grants in
147147 138amounts appropriated to approved organizations for the provision of services relating to the
148148 139evidence-based screening and detection of sickle cell disease as part of this program. The
149149 140services required to be provided under such grants shall include:
150150 141 (A) promotion and provision of early detection of sickle cell disease, including clinical
151151 142examinations and sickle cell disease screening services;
152152 143 (B) provision of counseling and information on treatment options and referral for
153153 144appropriate medical treatment;
154154 145 (C) dissemination of information to unserved and underserved populations as determined
155155 146by the commissioner, to the general public and to health care professionals concerning sickle cell
156156 147disease, the benefits of early detection and treatment, and the availability of sickle cell disease
157157 148screening services at no cost to such populations;
158158 149 (D) identification of local sickle cell disease screening services within the approved
159159 150organization's region;
160160 151 (E) provision of information, counseling and referral services to individuals diagnosed
161161 152with sickle cell disease; and
162162 153 (F) provision of information regarding the availability of medical assistance, including
163163 154medical assistance for an individual who is eligible for such assistance pursuant to section 9 of
164164 155chapter 118E of the General Laws, to an individual who requires treatment for sickle cell
165165 156disease. 9 of 20
166166 157 (2) The commissioner shall give notice and provide opportunity to submit applications
167167 158for grants under the program. In order to be considered for a grant, an applicant must show
168168 159evidence of the following, relating to the services the applicant proposes to provide:
169169 160 (A) ability to provide and to ensure consistent and quality services under the program;
170170 161 (B) expertise in providing the service;
171171 162 (C) capacity to coordinate services with physicians, hospitals and other appropriate local
172172 163institutions or agencies;
173173 164 (D) ability to provide the service to unserved or underserved populations; and
174174 165 (E) ability to provide the service in accordance with the standards specified in
175175 166subdivision three of this section.
176176 167 Applications shall be made on forms provided by the commissioner.
177177 168 (3) The commissioner shall develop standards for the implementation of grants under the
178178 169program by approved organizations, which shall ensure the following:
179179 170 (A) integration of the approved organization with existing health care providers;
180180 171 (B) maximizing third party reimbursement; and
181181 172 (C) provision of services to unserved or underserved populations.
182182 173 (4) Within the amounts of state or federal funds appropriated for the program, approved
183183 174organizations may be authorized by the department to provide such services for populations 10 of 20
184184 175served under this title. Services may include evidence based screening, patient education,
185185 176counseling, follow-up and referral.
186186 177 (5) Every organization receiving grants under this subsection shall submit to the
187187 178commissioner, on or before October first of each year, a report of such organization's activities,
188188 179including an assessment of the organization's programs and such data as the commissioner deems
189189 180relevant and necessary to accomplish the purposes of the program
190190 181 (d)(1) Under the program, the commissioner shall make grants within amounts
191191 182appropriated for community based organizations to provide post-diagnosis counseling, education
192192 183and outreach programs for persons diagnosed with sickle cell disease based upon criteria to be
193193 184developed by the commissioner.
194194 185 (2) The commissioner shall provide notice and opportunity for community-based
195195 186organizations to submit applications to provide post-diagnosis sickle cell disease counseling,
196196 187education and outreach programs. Such applications shall be on forms established by the
197197 188commissioner.
198198 189 (e) The commissioner shall submit, on or before December first of each year, an annual
199199 190report to the governor and the legislature concerning the operation of the program. The reports
200200 191shall include the experience of the program in providing services under this act. The annual
201201 192report shall include strategies for implementation of the sickle cell disease awareness program
202202 193and for promoting the awareness program to the general public, state and local elected officials,
203203 194and various public and private organizations, associations, businesses, industries, and agencies.
204204 195Organizations receiving grants under this act shall provide data and assessments as the 11 of 20
205205 196commissioner may require for the report. The report shall include any recommendations for
206206 197additional action to respond to the incidence of sickle cell disease in the commonwealth.
207207 198 (f) For the purposes of this section, the following words shall, unless the context clearly
208208 199requires otherwise, have the following meanings:-
209209 200 “Community-based organizations”, free-standing organizations in which sickle cell
210210 201disease survivors hold significant decision-making responsibility, and which offer a broad range
211211 202of sickle cell disease education and support services free of charge.
212212 203 “Program”, sickle cell disease detection and education program.
213213 204 “Unserved or underserved populations", people having inadequate access and financial
214214 205resources to obtain sickle cell disease screening and detection services, including people who
215215 206lack health coverage or whose health coverage is inadequate or who cannot meet the financial
216216 207requirements of their coverage for accessing detection services.
217217 208 SECTION XX. (a)(1) Notwithstanding any general or special law to the contrary, the
218218 209commissioner of public health or designee shall, in accordance with regulations adopted by the
219219 210department of public health pursuant to subsection (b), and in consultation with the
220220 211Massachusetts Sickle Cell Disease Association, establish and maintain a system for the reporting
221221 212of information on sickle cell disease and its variants. Said system shall include a record of the
222222 213cases of sickle cell disease and its variants which occur in the commonwealth along with such
223223 214information concerning the cases as may be appropriate to form the basis for: (A) conducting
224224 215comprehensive epidemiologic surveys of sickle cell disease and its variants in the
225225 216commonwealth; and (B) evaluating the appropriateness of measures for the treatment of sickle
226226 217cell disease and its variants. 12 of 20
227227 218 (2) Hospitals, medical laboratories, and other facilities that provide screening, diagnostic
228228 219or therapeutic services to patients with respect to sickle cell disease and its variants shall report
229229 220the information prescribed by the regulation promulgated pursuant to subsection (b).
230230 221 (3) Any provider of health care who diagnoses or provides treatment for sickle cell
231231 222disease and its variants, except for cases directly referred to the provider or cases that have been
232232 223previously admitted to a hospital, medical laboratory or other facility described in paragraph (2),
233233 224shall report the information prescribed by the regulation adopted pursuant to subsection (b).
234234 225 (b) The department of public health shall, by regulation:
235235 226 (1) prescribe the form and manner in which information on cases of sickle cell disease
236236 227and its variants must be reported in compliance with any applicable federal privacy law;
237237 228 (2) prescribe the information that must be included in each report, which must include,
238238 229without limitation: (A) the name, address, age and ethnicity of the patient; (B) the variant of
239239 230sickle cell disease with which the person has been diagnosed; (C) the method of treatment; (D)
240240 231any other diseases from which the patient suffers; (E) information concerning the usage of and
241241 232access to health care services by the patient; and (F) if a patient diagnosed with sickle cell
242242 233disease and its variants dies, his or her age at death and cause of death; and
243243 234 (3) establish a protocol for allowing appropriate access to and preserving the
244244 235confidentiality of the records of patients needed for research into sickle cell disease and its
245245 236variants;
246246 237 (4) establish a protocol for allowing information, in accordance with the preceding
247247 238subsections, to be communicated with Statewide Steering Committee on Sickle Cell Disease, the 13 of 20
248248 239sickle cell disease services program, and within the department as determined appropriate by the
249249 240commissioner.
250250 241 (c) The chief administrative officer of each health care facility in the commonwealth shall
251251 242make available to the commissioner or designee the records of the health care facility for each
252252 243case of sickle cell disease and its variants. The department of public health shall abstract from
253253 244the records of a health care facility or shall require a health care facility to abstract from its own
254254 245records such information as is required by regulations promulgated pursuant to subsection (b).
255255 246The department shall compile the information in a timely manner and not later than 6 months
256256 247after receipt of the abstracted information from the health care facility. The department shall by
257257 248regulation adopt a schedule of fees which must be assessed to a health care facility for each case
258258 249from which information is abstracted by the department. Any person who violates this section is
259259 250subject to an administrative penalty established by regulation by the department.
260260 251 (d) The department shall publish reports based upon the information obtained pursuant to
261261 252subsections (a), (b), and (c) and shall make other appropriate uses of the information to report
262262 253and assess trends in the usage of and access to health care services by patients with sickle cell
263263 254disease and its variants in a particular area or population, advance research and education
264264 255concerning sickle cell disease and its variants and improve treatment of sickle cell disease and its
265265 256variants and associated disorders. The reports must include, without limitation:
266266 257 (1) information concerning the locations in which patients diagnosed with sickle cell
267267 258disease and its variants reside, the demographics of such patients and the utilization of health
268268 259care services by such patients; 14 of 20
269269 260 (2) the information described in paragraph (1), specific to patients diagnosed with sickle
270270 261cell disease and its variants who are over 60 years of age or less than 5 years of age; and
271271 262 (3) information on the transition of patients diagnosed with sickle cell disease and its
272272 263variants from pediatric to adult care upon reaching 18 years of age.
273273 264 (e) The department shall provide any qualified researcher whom the department
274274 265determines is conducting valid scientific research with data from the reported information upon
275275 266the researcher’s: (1) compliance with appropriate conditions as established under the regulations
276276 267of the department; and (2) payment of a fee established by the department by regulation to cover
277277 268the cost of providing the data.
278278 269 (f) The commissioner or designee shall analyze the information obtained pursuant to
279279 270subsections (a), (b) and (c) and the reports published pursuant to subsection (d) to determine
280280 271whether any trends exist in the usage of and access to health care services by patients with sickle
281281 272cell disease and its variants in a particular area or population.
282282 273 (g) If the commissioner or designee determines that a trend exists in the usage of and
283283 274access to health care services by patients with sickle cell disease and its variants in a particular
284284 275area or population, the commissioner or designee shall work with appropriate governmental,
285285 276educational and research entities to investigate the trend, advance research in the trend and
286286 277facilitate the treatment of sickle cell disease and its variants and associated disorders.
287287 278 (h) The department shall not reveal the identity of any patient, physician, or health care
288288 279facility which is involved in any reporting required by this section unless the patient, physician
289289 280or health care facility gives prior written consent to such a disclosure. A person or governmental
290290 281entity that provides information to the department pursuant to this section shall not be held liable 15 of 20
291291 282in a civil or criminal action for sharing confidential information unless the person or organization
292292 283has done so in bad faith or with malicious purpose.
293293 284 (i) For the purposes of this section, the following words shall, unless the context clearly
294294 285requires otherwise, have the following meanings:-
295295 286 “Sickle cell disease and its variants”, an inherited disease caused by a mutation in a gene
296296 287for hemoglobin in which red blood cells have an abnormal crescent shape that causes them to
297297 288block small blood cells and die sooner than normal.
298298 289 SECTION XX. (a)(1) Notwithstanding any general or special law to the contrary, if a
299299 290newborn screening for hereditary disorders performed pursuant to section 270.006(A)(2)(e) of
300300 291chapter 105, Code of Massachusetts Regulations detects the presence of sickle cell trait, the
301301 292laboratory performing the screening shall notify the physician responsible for the newborn’s care
302302 293and shall document the patient’s information in the central registry established pursuant to
303303 294paragraph (2) in a manner and on forms prescribed by the department of public health.
304304 295 (2) The physician responsible for such newborn’s care shall provide the patient’s parents
305305 296with information concerning the availability, benefits, and role of genetic counseling performed
306306 297by a genetic counselor licensed pursuant to section 253 of chapter 112 of the General Laws,
307307 298including a document available in multiple languages (as determined by the department) that
308308 299identifies at least 10 genetic counselors and the public health care payers and private health care
309309 300payers which contract with each such genetic counselor. In the case a physician described in the
310310 301preceding sentence is not identified, the laboratory described in paragraph (1) shall provide the
311311 302patient’s parents with such information relating to genetic counseling. Genetic counseling
312312 303concerning a diagnosis of sickle cell trait shall include, but not be limited to, information 16 of 20
313313 304concerning the fact that one or both of the parents carries sickle cell trait and the risk that other
314314 305children born to the parents may carry sickle cell trait or may be born with sickle cell disease.
315315 306 (b)(1) The commissioner of public health shall establish a central registry of patients
316316 307diagnosed with sickle cell trait. The information in the central registry shall be used for the
317317 308purposes of compiling statistical information and assisting the provision of follow-up counseling,
318318 309intervention, and educational services to patients and to the parents of patients who are listed in
319319 310the registry including, but not limited to, information concerning the availability and benefits of
320320 311genetic counseling performed by a genetic counselor licensed pursuant to section 253 of chapter
321321 312112 of the General Laws.
322322 313 (2) The commissioner shall establish a system to notify the parents of patients who are
323323 314listed in the registry that follow-up consultations with a physician are recommended for children
324324 315diagnosed with sickle cell trait. Such notifications shall be provided: at least once when the
325325 316patient is in early adolescence, when the patient may begin to participate in strenuous athletic
326326 317activities that could result in adverse symptoms for a person with sickle cell trait; at least once
327327 318during later adolescence, when the patient should be made aware of the reproductive
328328 319implications of sickle cell trait; and at such other intervals as the commissioner may require.
329329 320 (3) The commissioner shall establish a system under which the department shall make
330330 321reasonable efforts to notify patients listed in the registry who reach the age of 18 years of the
331331 322patient’s inclusion in the registry and of the availability of educational services, genetic
332332 323counseling, and other resources that may be beneficial to the patient.
333333 324 (4) Information on newborn infants and their families compiled pursuant to this section
334334 325may be used by the department and agencies designated by the commissioner of public health for 17 of 20
335335 326the purposes of carrying out this act, but otherwise the information shall not be a public record
336336 327and shall be confidential and not divulged or made public so as to disclose the identity of any
337337 328person to whom it relates, except as exempted or consented in accordance with section 10 of
338338 329chapter 66 or section 70G of chapter 111 of the General Laws, respectively.
339339 330 SECTION XX. (a) Notwithstanding any general or special law to the contrary, the
340340 331division of medical assistance shall ensure the availability of accessible, quality health care for
341341 332individuals with sickle cell disease who are enrolled in Medicaid managed care organizations or
342342 333accountable care organizations that have a contract with the division to provide services to
343343 334individuals enrolled under MassHealth pursuant to section 9 of chapter 118E of the General
344344 335Laws. Such health care shall include, but not be limited to the following:
345345 336 (1) comprehensive integrated care management for sickle cell disease, including primary
346346 337care, specialized care, and mental health services;
347347 338 (2) sickle cell trait testing and genetic counseling;
348348 339 (3) social work services as well as education on disease management to patients,
349349 340caregivers, and providers; and
350350 341 (4) support navigating health insurance coverage and support with transportation to
351351 342treatment centers.
352352 343 (b) Not later than the fiscal year 2024 contract year, the division of medical assistance
353353 344shall require Medicaid managed care or accountable care organizations to implement a sickle cell
354354 345disease quality strategy for children and adults with sickle cell disease that includes, but is not
355355 346limited to, the following components: 18 of 20
356356 347 (1) measurable goals to improve the identification of members with sickle cell disease
357357 348within 90 days after enrolling in the contracted health plan;
358358 349 (2) to the extent practicable, adequate provider network capacity to ensure timely access
359359 350to sickle cell disease specialty service providers, including, but not limited to, hematologists;
360360 351 (3) care coordination strategies and supports to help members with sickle cell disease
361361 352access sickle cell disease specialists and other related care supports;
362362 353 (4) delivery of a training curriculum approved by the division of medical assistance to
363363 354educate primary care providers on sickle cell disease, including information on emergency
364364 355warning signs and complications, evidence-based practices and treatment guidelines, and when
365365 356to make referrals to specialty sickle cell disease treatment providers; and
366366 357 (5) in the case of an individual who is diagnosed with sick cell disease, exceptions to
367367 358otherwise applicable prior authorization or dispensing limits for pain medications that are
368368 359designed to reduce barriers for such an individual to be able to obtain the appropriate dosage and
369369 360amount of a pain medication in a timely manner.
370370 361 (c) The division of medical assistance shall also do the following:
371371 362 (1) Not later than the fiscal year 2025 contract year, require each Medicaid managed care
372372 363organization and accountable care organization to report, on a quarterly basis, an unduplicated
373373 364count of children and adults identified as having sickle cell disease enrolled with the contracted
374374 365plan during the quarter. The department shall publish these reports, by contracted plan, on the
375375 366department's website. 19 of 20
376376 367 (2) Not later than January 1, 2025, and in partnership with Medicaid managed care
377377 368organizations and accountable care organizations, identify, document, and share best practices
378378 369regarding sickle cell disease care management and care coordination with Medicaid-enrolled
379379 370primary care and sickle cell disease specialty providers with a goal of improving services for
380380 371members with sickle cell disease and their families.
381381 372 (3) Enter into a contract not later than January 1, 2025, with a publicly funded university
382382 373to develop a sickle cell disease-focused comprehensive assessment tool or a supplement to an
383383 374existing comprehensive assessment tool to screen members identified with sickle cell disease for
384384 375comorbidities, medical history for the treatment of sickle cell disease including disease-
385385 376modifying medications and pain management, psychosocial history, barriers to accessing or
386386 377completing treatments, social supports, other care coordinators working with the member,
387387 378community resources being used or needed, quality of life, and personal preferences for
388388 379engagement with a care coordinator.
389389 380 (4) Not later than the fiscal year 2025 contract year, establish performance measures
390390 381relative to access to care and available therapies, engagement in treatment, and outcomes for
391391 382individuals with sickle cell disease, with the metrics to be reported annually by the
392392 383comprehensive health care program to Medicaid managed care organizations and accountable
393393 384care organizations and with incentive payments attached to the measures.
394394 385 (5) Not later than January 1, 2025, develop a plan for improving the transition from
395395 386pediatric care to adult care for adolescents with sickle cell disease who are aging out of the
396396 387Medicaid program, and a plan for helping qualified beneficiaries maintain Medicaid coverage
397397 388under another eligibility category, in order to maintain continuity of care. 20 of 20
398398 389 (d) The division of medical assistance shall provide an annual sickle cell disease
399399 390management and accountability report to the senate and house committees on ways and means,
400400 391including the status of sickle cell disease-focused access to care, quality of services, health
401401 392outcomes, and disparities in the commonwealth.
402402 393 (e) The division of medical assistance shall incorporate the sickle cell disease
403403 394management and accountability standards into its contracts with managed care plans and
404404 395accountable care organizations, including financial or administrative penalties for lack of
405405 396performance. Contracted plan rates must be adjusted to reflect enhanced care or other provisions
406406 397that are shifted to the contracted plans."