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Massachusetts House Bill H1161

Massachusetts 2023-2024 Regular Session

Massachusetts House Bill H1161 Compare Versions

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22 HOUSE DOCKET, NO. 2269 FILED ON: 1/19/2023
33 HOUSE . . . . . . . . . . . . . . . No. 1161
44 The Commonwealth of Massachusetts
55 _________________
66 PRESENTED BY:
77 Bud L. Williams and David M. Rogers
88 _________________
99 To the Honorable Senate and House of Representatives of the Commonwealth of Massachusetts in General
1010 Court assembled:
1111 The undersigned legislators and/or citizens respectfully petition for the adoption of the accompanying bill:
1212 An Act to improve sickle cell care.
1313 _______________
1414 PETITION OF:
1515 NAME:DISTRICT/ADDRESS :DATE ADDED:Bud L. Williams11th Hampden1/19/2023David M. Rogers24th Middlesex1/19/2023Rob Consalvo14th Suffolk2/9/2023 1 of 23
1616 HOUSE DOCKET, NO. 2269 FILED ON: 1/19/2023
1717 HOUSE . . . . . . . . . . . . . . . No. 1161
1818 By Representatives Williams of Springfield and Rogers of Cambridge, a petition (accompanied
1919 by bill, House, No. 1161) of Bud L. Williams, David M. Rogers and Rob Consalvo for
2020 legislation to to improve sickle cell disease care. Financial Services.
2121 The Commonwealth of Massachusetts
2222 _______________
2323 In the One Hundred and Ninety-Third General Court
2424 (2023-2024)
2525 _______________
2626 An Act to improve sickle cell care.
2727 Be it enacted by the Senate and House of Representatives in General Court assembled, and by the authority
2828 of the same, as follows:
2929 1 SECTION 1. Chapter 118E of the General Laws is hereby amended by inserting after
3030 2section 10N the following section:
3131 3 Section 10O. (a) For the purposes of this section, the following words shall, unless the
3232 4context clearly requires otherwise, have the following meanings:-
3333 5 (1) "Iatrogenic infertility", in impairment of fertility by surgery, radiation, chemotherapy,
3434 6or other medical treatment affecting reproductive organs or processes, including without
3535 7limitation treatment for sickle cell disease.
3636 8 (2) "Physician", an individual licensed to practice under section 2 of chapter 112.
3737 9 (3) "Qualified enrollee", an individual who:
3838 10 (A) is enrolled in the MassHealth program pursuant to section 9; 2 of 23
3939 11 (B) has been diagnosed with a form of cancer or other disease by a physician;
4040 12 (C) needs treatment for that cancer or other disease that may cause substantial risk of
4141 13sterility or iatrogenic infertility, including surgery, radiation, or chemotherapy; and
4242 14 (D) has a primary illness that has impaired the patient’s fertility and ability to reproduce
4343 15normally.
4444 16 (4) "Standard Fertility Preservation Services", procedures based upon current evidence-
4545 17based standards of care established by the American Society for Reproductive Medicine, the
4646 18American Society of Clinical Oncology, or other national medical associations that follow
4747 19current evidence-based standards of care, and includes the retrieval and storage of two complete
4848 20oocyte cycles and the collection and storage of two sperm samples.
4949 21 (b)(1) Before January 1, 2024, the division of medical assistance shall apply for a
5050 22Medicaid waiver or a state plan amendment with the Centers for Medicare & Medicaid Services
5151 23of the United States Department of Health and Human Services to implement the coverage
5252 24described in subsection (b).
5353 25 (2) If the waiver or state plan amendment described in subsection (a) is approved,
5454 26MassHealth shall provide coverage to a qualified enrollee for standard fertility preservation
5555 27services.
5656 28 (c) Before November 1, 2025, and before November 1 of each third year after 2025, the
5757 29division of medical assistance shall calculate the change in state spending attributable to the
5858 30coverage described in subsection (b)(2), and report this amount to house and senate committees
5959 31on ways and means 3 of 23
6060 32 Commercial Insurance Coverage for Fertility Preservation Services
6161 33 SECTION 2. (a) Notwithstanding any general or special law to the contrary, any policy,
6262 34contract or certificate of health insurance subject to chapters 32A, 175, 176A, 176B, 176G, 176I,
6363 35176J or 176Q of the General Laws must provide coverage for medically necessary expenses for
6464 36standard fertility preservation services when a necessary medical treatment may directly or
6565 37indirectly cause iatrogenic infertility to an enrollee.
6666 38 (b) In determining coverage pursuant to this section, an insurer shall not discriminate
6767 39based on an individual's expected length of life, present or predicted disability, degree of medical
6868 40dependency, quality of life, or other health conditions, nor based on personal characteristics,
6969 41including age, sex, sexual orientation, or marital status.
7070 42 (c) For the purposes of this section, the following words shall, unless the context clearly
7171 43requires otherwise, have the following meanings:-
7272 44 “Iatrogenic infertility”, in impairment of fertility by surgery, radiation, chemotherapy, or
7373 45other medical treatment affecting reproductive organs or processes, including without limitation
7474 46treatment for sickle cell disease.
7575 47 “May directly or indirectly cause”, the likely possibility that treatment will cause a side
7676 48effect of infertility, based upon current evidence-based standards of care established by the
7777 49American Society for Reproductive Medicine, the American Society of Clinical Oncology, or
7878 50other national medical associations that follow current evidence-based standards of care.
7979 51 “Standard fertility preservation services”, procedures based upon current evidence-based
8080 52standards of care established by the American Society for Reproductive Medicine, the American 4 of 23
8181 53Society of Clinical Oncology, or other national medical associations that follow current
8282 54evidence-based standards of care, and includes the retrieval and storage of two complete oocyte
8383 55cycles and the collection and storage of two sperm samples.
8484 56 STATEWIDE SCD STEERING COMMITTEE
8585 57 SECTION 3. (a)(1) Notwithstanding any general or special law to the contrary, there is
8686 58hereby established a Statewide Steering Committee on Sickle Cell Disease within the department
8787 59of public health.
8888 60 (2) The Steering Committee under this section shall consist of:
8989 61 (A) two representatives from the Massachusetts Sickle Cell Disease Association
9090 62including the Executive Director or their designee;
9191 63 (B) three medical professionals from major Sickle Cell Disease treatment centers in the
9292 64commonwealth who shall be appointed by the commissioner;
9393 65 (C) the Executive Director of the Massachusetts Association of Community Health
9494 66Workers or their designee;
9595 67 (D) the President of the Massachusetts Chapter of the National Association of Social
9696 68Workers or their designee;
9797 69 (E) two members who shall be appointed by the commissioner, one of whom shall be an
9898 70expert on the biology of the disease, and one of whom shall be an expert on the psycho-social
9999 71aspect of the disease; 5 of 23
100100 72 (F) two representatives of the department of elementary and secondary education who
101101 73shall be appointed by the commissioner, including one of whom is knowledgeable about the right
102102 74to comparable education, supportive services and accommodations under section 504 of the
103103 75Rehabilitation Act of 1973;
104104 76 (G) one representative of the Black and Latino Caucus who shall be appointed by the
105105 77commissioner;
106106 78 (H) one representative of the Asian Caucus who shall be appointed by the commissioner;
107107 79 (I) two sickle cell disease patients who shall be appointed by the Governor, one of which
108108 80shall be over 25 years in age and the other shall be between 18 and 25 years in age;
109109 81 (J) a parent of a minor child with sickle cell disease who shall be appointed by the
110110 82Governor;
111111 83 (K) a parent of a secondary or post-secondary school age youth with sickle cell disease
112112 84who shall be appointed by the commissioner; and
113113 85 (L) one representative who has a background in racial health disparities who shall be
114114 86appointed by the Governor.
115115 87 The representatives of nongovernmental organizations shall serve staggered 3–year
116116 88terms. Vacancies of unexpired terms shall be filled within 60 days by the appropriate appointing
117117 89authority.
118118 90 (3) The Steering Committee under this section shall: 6 of 23
119119 91 (A) establish institution and community partnerships, including hospitals, and institutions
120120 92of higher education;
121121 93 (B) establish a statewide network of stakeholders, including parents, home health care
122122 94providers, school-based nurses, and the Massachusetts Sickle Cell Disease Association who are
123123 95committed to care for individuals with sickle cell disease collaboratively in an inclusive setting;
124124 96 (C) establish a statewide network of racially and culturally competent stakeholders who
125125 97include general and special education administrators and teachers and paraprofessionals;
126126 98 (D) oversee the development of educational materials for individuals with sickle cell
127127 99disease, the public, and health care providers about the assistance available to such individuals in
128128 100the commonwealth, including local school district responsibilities for care of such individuals;
129129 101 (E) identify funding sources for implementing or supporting the actions, studies, policies
130130 102required by federal and state laws and regulations, or recommended by the Steering Committee,
131131 103including funding from:
132132 104 (i) state, federal, and local government sources; and
133133 105 (ii) private sources;
134134 106 (F) investigate and report on a standard of basic, multidisciplinary care for patients across
135135 107the commonwealth; and
136136 108 (G) establish subcommittees as appropriate.
137137 109 (4) The department may, in consultation with the Statewide Steering Committee, provide
138138 110services relating to sickle cell disease, including: 7 of 23
139139 111 (A) educational programs on sickle cell disease for individuals affected by the disease,
140140 112including:
141141 113 (i) education on the rights of individuals with sickle cell disease, such as, without
142142 114limitation, the right not to be discriminated against and the right to receive appropriate
143143 115educational programming, health related services and accommodations necessary to access such
144144 116programming and services;
145145 117 (ii) expectations, options, and responsibilities of families of individuals with sickle cell
146146 118disease;
147147 119 (iii) challenges and responsibilities of caregivers of individuals with sickle cell disease;
148148 120 (iv) obligations of employees at primary and secondary schools; and
149149 121 (v) challenges and responsibilities of health care providers;
150150 122 (B) social services support to individuals with sickle cell disease, including support from
151151 123social workers and community health workers to provide information on services that may be
152152 124available to the individual;
153153 125 (C) hemoglobin electrophoresis or genetic testing for the presence of sickle cell disease;
154154 126 (D) genetic counseling;
155155 127 (E) assistance with any available reimbursement for medical expenses related to sickle
156156 128cell disease;
157157 129 (F) education and counseling services for parents and other family members and
158158 130caretakers after the receipt of sickle cell trait test results from the Newborn Screening Program as 8 of 23
159159 131required by section 270.006(A)(2)(e) of chapter 105, Code of Massachusetts Regulations,
160160 132provided that, with the consent of parents and other family members and caretakers, such
161161 133services may be provided in whole or in part by the Massachusetts Sickle Cell Disease
162162 134Association; and
163163 135 (G) any other programs or services that are necessary to decrease the use of acute care
164164 136services by individuals who have sickle cell disease.
165165 137 (5) The department shall, in consultation with any other agency of the commonwealth as
166166 138the department determines appropriate, provide the services in paragraph (4) through
167167 139community–based organizations, including specifically, pre-K, elementary and secondary
168168 140schools as well as institutions for higher education for all affected school-age children, youth,
169169 141and older students to the extent practicable.
170170 142 (6) The Steering Committee, in conjunction with the department and other relevant
171171 143stakeholders, shall study and make recommendations on:
172172 144 (A) how to enhance access to services for individuals with sickle cell disease with a focus
173173 145on areas in the commonwealth where there is a statistically high number of individuals with
174174 146sickle cell disease or in areas where there is a lack of providers with expertise in treating sickle
175175 147cell disease;
176176 148 (B) whether to establish a sickle cell disease registry, and if recommended, the process
177177 149and guidelines for establishing a registry and obtaining information consistent with informed
178178 150consent and protecting data privacy; 9 of 23
179179 151 (C) how to enhance the coordination of health care services for individuals with sickle
180180 152cell disease who are transitioning from pediatric to adult health care, including the identification
181181 153of available resources for individuals who are transitioning; and
182182 154 (D) how to engage with community–based health fairs and other community–sponsored
183183 155events in areas with a statistically high number of individuals with sickle cell disease to provide
184184 156outreach and education on living with sickle cell disease and how to access health care services.
185185 157 (b) The department shall, in consultation with the Steering Committee, establish and
186186 158implement a system the provides information on the sickle cell trait to any individual who has
187187 159the sickle cell trait and, if the individual is a minor, to the individual’s family.
188188 160 (c) The department shall include the following in the information provided under
189189 161subsection (b):
190190 162 (1) how the sickle cell trait impacts the health of an individual with the trait;
191191 163 (2) how the sickle cell trait is passed from a parent to a child; and
192192 164 (3) implications for pregnancy.
193193 165 (d) The department shall maintain in a conspicuous location on its website a list of
194194 166resources for health care practitioners to use to improve their understanding and clinical
195195 167treatment of individuals with sickle cell disease or the sickle cell trait, including information on
196196 168the health impacts of carrying the sickle cell trait.
197197 169 (e) For the purposes of this section, the following word shall, unless the context clearly
198198 170requires otherwise, have the following meaning:- 10 of 23
199199 171 “Steering Committee”, the Statewide Steering Committee on Sickle Cell Disease.
200200 172 SICKLE CELL DISEASE DETECTION AND EDUCATION PROGRAM (ADULT
201201 173SCREENING AND EDUCATION- RELATED GRANTS)
202202 174 SECTION 4. (a) Notwithstanding any general or special law to the contrary, there is
203203 175hereby established within the department of public health the sickle cell disease detection and
204204 176education program to: (1) promote screening and detection of sickle cell disease, especially
205205 177among unserved or underserved populations; (2) educate the public regarding sickle cell disease
206206 178and the benefits of early detection; and (3) provide counseling and referral services.
207207 179 (b) The program under this section shall include:
208208 180 (1) establishment of a statewide public education and outreach campaign to publicize
209209 181evidence-based sickle cell disease screening, detection and education services. The campaign
210210 182shall include: general community education, outreach to specific underserved populations,
211211 183evidence based clinical sickle cell disease screening services, and an informational summary that
212212 184shall include an explanation of the importance of clinical examinations and what to expect during
213213 185clinical examinations and sickle cell disease screening services;
214214 186 (2) provision of grants to approved organizations pursuant to subsection (c) and for
215215 187community based organizations pursuant to subsection (d);
216216 188 (3) compilation of data concerning the program and dissemination of such data to the
217217 189public; and
218218 190 (4) development of health care professional education programs including the benefits of
219219 191early detection of sickle cell disease and clinical examinations, the recommended frequency of 11 of 23
220220 192clinical examinations and sickle cell disease screening services, and professionally recognized
221221 193best practices guidelines.
222222 194 (c)(1) Under the program, the commissioner of public health shall make grants in
223223 195amounts appropriated to approved organizations for the provision of services relating to the
224224 196evidence-based screening and detection of sickle cell disease as part of this program. The
225225 197services required to be provided under such grants shall include:
226226 198 (A) promotion and provision of early detection of sickle cell disease, including clinical
227227 199examinations and sickle cell disease screening services;
228228 200 (B) provision of counseling and information on treatment options and referral for
229229 201appropriate medical treatment;
230230 202 (C) dissemination of information to unserved and underserved populations as determined
231231 203by the commissioner, to the general public and to health care professionals concerning sickle cell
232232 204disease, the benefits of early detection and treatment, and the availability of sickle cell disease
233233 205screening services at no cost to such populations;
234234 206 (D) identification of local sickle cell disease screening services within the approved
235235 207organization's region;
236236 208 (E) provision of information, counseling and referral services to individuals diagnosed
237237 209with sickle cell disease; and
238238 210 (F) provision of information regarding the availability of medical assistance, including
239239 211medical assistance for an individual who is eligible for such assistance pursuant to section 9 of 12 of 23
240240 212chapter 118E of the General Laws, to an individual who requires treatment for sickle cell
241241 213disease.
242242 214 (2) The commissioner shall give notice and provide opportunity to submit applications
243243 215for grants under the program. In order to be considered for a grant, an applicant must show
244244 216evidence of the following, relating to the services the applicant proposes to provide:
245245 217 (A) ability to provide and to ensure consistent and quality services under the program;
246246 218 (B) expertise in providing the service;
247247 219 (C) capacity to coordinate services with physicians, hospitals and other appropriate local
248248 220institutions or agencies;
249249 221 (D) ability to provide the service to unserved or underserved populations; and
250250 222 (E) ability to provide the service in accordance with the standards specified in
251251 223subdivision three of this section.
252252 224 Applications shall be made on forms provided by the commissioner.
253253 225 (3) The commissioner shall develop standards for the implementation of grants under the
254254 226program by approved organizations, which shall ensure the following:
255255 227 (A) integration of the approved organization with existing health care providers;
256256 228 (B) maximizing third party reimbursement; and
257257 229 (C) provision of services to unserved or underserved populations. 13 of 23
258258 230 (4) Within the amounts of state or federal funds appropriated for the program, approved
259259 231organizations may be authorized by the department to provide such services for populations
260260 232served under this title. Services may include evidence based screening, patient education,
261261 233counseling, follow-up and referral.
262262 234 (5) Every organization receiving grants under this subsection shall submit to the
263263 235commissioner, on or before October first of each year, a report of such organization's activities,
264264 236including an assessment of the organization's programs and such data as the commissioner deems
265265 237relevant and necessary to accomplish the purposes of the program
266266 238 (d)(1) Under the program, the commissioner shall make grants within amounts
267267 239appropriated for community based organizations to provide post-diagnosis counseling, education
268268 240and outreach programs for persons diagnosed with sickle cell disease based upon criteria to be
269269 241developed by the commissioner.
270270 242 (2) The commissioner shall provide notice and opportunity for community-based
271271 243organizations to submit applications to provide post-diagnosis sickle cell disease counseling,
272272 244education and outreach programs. Such applications shall be on forms established by the
273273 245commissioner.
274274 246 (e) The commissioner shall submit, on or before December first of each year, an annual
275275 247report to the governor and the legislature concerning the operation of the program. The reports
276276 248shall include the experience of the program in providing services under this act. The annual
277277 249report shall include strategies for implementation of the sickle cell disease awareness program
278278 250and for promoting the awareness program to the general public, state and local elected officials,
279279 251and various public and private organizations, associations, businesses, industries, and agencies. 14 of 23
280280 252Organizations receiving grants under this act shall provide data and assessments as the
281281 253commissioner may require for the report. The report shall include any recommendations for
282282 254additional action to respond to the incidence of sickle cell disease in the commonwealth.
283283 255 (f) For the purposes of this section, the following words shall, unless the context clearly
284284 256requires otherwise, have the following meanings:-
285285 257 “Community-based organizations”, free-standing organizations in which sickle cell
286286 258disease survivors hold significant decision-making responsibility, and which offer a broad range
287287 259of sickle cell disease education and support services free of charge.
288288 260 “Program”, sickle cell disease detection and education program.
289289 261 “Unserved or underserved populations", people having inadequate access and financial
290290 262resources to obtain sickle cell disease screening and detection services, including people who
291291 263lack health coverage or whose health coverage is inadequate or who cannot meet the financial
292292 264requirements of their coverage for accessing detection services.
293293 265 SCD REGISTRY AND REPORTS- COMPREHENSIVE DATA COLLECTION ON
294294 266PEOPLE LIVING WITH SCD OR ITS VARIANTS
295295 267 SECTION 5. (a)(1) Notwithstanding any general or special law to the contrary, the
296296 268commissioner of public health or designee shall, in accordance with regulations adopted by the
297297 269department of public health pursuant to subsection (b), and in consultation with the
298298 270Massachusetts Sickle Cell Disease Association, establish and maintain a system for the reporting
299299 271of information on sickle cell disease and its variants. Said system shall include a record of the
300300 272cases of sickle cell disease and its variants which occur in the commonwealth along with such 15 of 23
301301 273information concerning the cases as may be appropriate to form the basis for: (A) conducting
302302 274comprehensive epidemiologic surveys of sickle cell disease and its variants in the
303303 275commonwealth; and (B) evaluating the appropriateness of measures for the treatment of sickle
304304 276cell disease and its variants.
305305 277 (2) Hospitals, medical laboratories, and other facilities that provide screening, diagnostic
306306 278or therapeutic services to patients with respect to sickle cell disease and its variants shall report
307307 279the information prescribed by the regulation promulgated pursuant to subsection (b).
308308 280 (3) Any provider of health care who diagnoses or provides treatment for sickle cell
309309 281disease and its variants, except for cases directly referred to the provider or cases that have been
310310 282previously admitted to a hospital, medical laboratory or other facility described in paragraph (2),
311311 283shall report the information prescribed by the regulation adopted pursuant to subsection (b).
312312 284 (b) The department of public health shall, by regulation:
313313 285 (1) prescribe the form and manner in which information on cases of sickle cell disease
314314 286and its variants must be reported in compliance with any applicable federal privacy law;
315315 287 (2) prescribe the information that must be included in each report, which must include,
316316 288without limitation: (A) the name, address, age and ethnicity of the patient; (B) the variant of
317317 289sickle cell disease with which the person has been diagnosed; (C) the method of treatment; (D)
318318 290any other diseases from which the patient suffers; (E) information concerning the usage of and
319319 291access to health care services by the patient; and (F) if a patient diagnosed with sickle cell
320320 292disease and its variants dies, his or her age at death and cause of death; and 16 of 23
321321 293 (3) establish a protocol for allowing appropriate access to and preserving the
322322 294confidentiality of the records of patients needed for research into sickle cell disease and its
323323 295variants;
324324 296 (4) establish a protocol for allowing information, in accordance with the preceding
325325 297subsections, to be communicated with Statewide Steering Committee on Sickle Cell Disease, the
326326 298sickle cell disease services program, and within the department as determined appropriate by the
327327 299commissioner.
328328 300 (c) The chief administrative officer of each health care facility in the commonwealth shall
329329 301make available to the commissioner or designee the records of the health care facility for each
330330 302case of sickle cell disease and its variants. The department of public health shall abstract from
331331 303the records of a health care facility or shall require a health care facility to abstract from its own
332332 304records such information as is required by regulations promulgated pursuant to subsection (b).
333333 305The department shall compile the information in a timely manner and not later than 6 months
334334 306after receipt of the abstracted information from the health care facility. The department shall by
335335 307regulation adopt a schedule of fees which must be assessed to a health care facility for each case
336336 308from which information is abstracted by the department. Any person who violates this section is
337337 309subject to an administrative penalty established by regulation by the department.
338338 310 (d) The department shall publish reports based upon the information obtained pursuant to
339339 311subsections (a), (b), and (c) and shall make other appropriate uses of the information to report
340340 312and assess trends in the usage of and access to health care services by patients with sickle cell
341341 313disease and its variants in a particular area or population, advance research and education 17 of 23
342342 314concerning sickle cell disease and its variants and improve treatment of sickle cell disease and its
343343 315variants and associated disorders. The reports must include, without limitation:
344344 316 (1) information concerning the locations in which patients diagnosed with sickle cell
345345 317disease and its variants reside, the demographics of such patients and the utilization of health
346346 318care services by such patients;
347347 319 (2) the information described in paragraph (1), specific to patients diagnosed with sickle
348348 320cell disease and its variants who are over 60 years of age or less than 5 years of age; and
349349 321 (3) information on the transition of patients diagnosed with sickle cell disease and its
350350 322variants from pediatric to adult care upon reaching 18 years of age.
351351 323 (e) The department shall provide any qualified researcher whom the department
352352 324determines is conducting valid scientific research with data from the reported information upon
353353 325the researcher’s: (1) compliance with appropriate conditions as established under the regulations
354354 326of the department; and (2) payment of a fee established by the department by regulation to cover
355355 327the cost of providing the data.
356356 328 (f) The commissioner or designee shall analyze the information obtained pursuant to
357357 329subsections (a), (b) and (c) and the reports published pursuant to subsection (d) to determine
358358 330whether any trends exist in the usage of and access to health care services by patients with sickle
359359 331cell disease and its variants in a particular area or population.
360360 332 (g) If the commissioner or designee determines that a trend exists in the usage of and
361361 333access to health care services by patients with sickle cell disease and its variants in a particular
362362 334area or population, the commissioner or designee shall work with appropriate governmental, 18 of 23
363363 335educational and research entities to investigate the trend, advance research in the trend and
364364 336facilitate the treatment of sickle cell disease and its variants and associated disorders.
365365 337 (h) The department shall not reveal the identity of any patient, physician, or health care
366366 338facility which is involved in any reporting required by this section unless the patient, physician
367367 339or health care facility gives prior written consent to such a disclosure. A person or governmental
368368 340entity that provides information to the department pursuant to this section shall not be held liable
369369 341in a civil or criminal action for sharing confidential information unless the person or organization
370370 342has done so in bad faith or with malicious purpose.
371371 343 (i) For the purposes of this section, the following words shall, unless the context clearly
372372 344requires otherwise, have the following meanings:-
373373 345 “Sickle cell disease and its variants”, an inherited disease caused by a mutation in a gene
374374 346for hemoglobin in which red blood cells have an abnormal crescent shape that causes them to
375375 347block small blood cells and die sooner than normal.
376376 348 SCD REGISTRY AND REPORTS- DATA COLLECTION ON SCD TRAIT
377377 349 SECTION 6. (a)(1) Notwithstanding any general or special law to the contrary, if a
378378 350newborn screening for hereditary disorders performed pursuant to section 270.006(A)(2)(e) of
379379 351chapter 105, Code of Massachusetts Regulations detects the presence of sickle cell trait, the
380380 352laboratory performing the screening shall notify the physician responsible for the newborn’s care
381381 353and shall document the patient’s information in the central registry established pursuant to
382382 354paragraph (2) in a manner and on forms prescribed by the department of public health. 19 of 23
383383 355 (2) The physician responsible for such newborn’s care shall provide the patient’s parents
384384 356with information concerning the availability, benefits, and role of genetic counseling performed
385385 357by a genetic counselor licensed pursuant to section 253 of chapter 112 of the General Laws,
386386 358including a document available in multiple languages (as determined by the department) that
387387 359identifies at least 10 genetic counselors and the public health care payers and private health care
388388 360payers which contract with each such genetic counselor. In the case a physician described in the
389389 361preceding sentence is not identified, the laboratory described in paragraph (1) shall provide the
390390 362patient’s parents with such information relating to genetic counseling. Genetic counseling
391391 363concerning a diagnosis of sickle cell trait shall include, but not be limited to, information
392392 364concerning the fact that one or both of the parents carries sickle cell trait and the risk that other
393393 365children born to the parents may carry sickle cell trait or may be born with sickle cell disease.
394394 366 (b)(1) The commissioner of public health shall establish a central registry of patients
395395 367diagnosed with sickle cell trait. The information in the central registry shall be used for the
396396 368purposes of compiling statistical information and assisting the provision of follow-up counseling,
397397 369intervention, and educational services to patients and to the parents of patients who are listed in
398398 370the registry including, but not limited to, information concerning the availability and benefits of
399399 371genetic counseling performed by a genetic counselor licensed pursuant to section 253 of chapter
400400 372112 of the General Laws.
401401 373 (2) The commissioner shall establish a system to notify the parents of patients who are
402402 374listed in the registry that follow-up consultations with a physician are recommended for children
403403 375diagnosed with sickle cell trait. Such notifications shall be provided: at least once when the
404404 376patient is in early adolescence, when the patient may begin to participate in strenuous athletic
405405 377activities that could result in adverse symptoms for a person with sickle cell trait; at least once 20 of 23
406406 378during later adolescence, when the patient should be made aware of the reproductive
407407 379implications of sickle cell trait; and at such other intervals as the commissioner may require.
408408 380 (3) The commissioner shall establish a system under which the department shall make
409409 381reasonable efforts to notify patients listed in the registry who reach the age of 18 years of the
410410 382patient’s inclusion in the registry and of the availability of educational services, genetic
411411 383counseling, and other resources that may be beneficial to the patient.
412412 384 (4) Information on newborn infants and their families compiled pursuant to this section
413413 385may be used by the department and agencies designated by the commissioner of public health for
414414 386the purposes of carrying out this act, but otherwise the information shall not be a public record
415415 387and shall be confidential and not divulged or made public so as to disclose the identity of any
416416 388person to whom it relates, except as exempted or consented in accordance with section 10 of
417417 389chapter 66 or section 70G of chapter 111 of the General Laws, respectively.
418418 390 DEVELOPMENT OF A COMPREHENSIVE SCD DISEASE QUALITY STRATEGY
419419 391IN MEDICAID MANAGED CARE
420420 392 SECTION 7. (a) Notwithstanding any general or special law to the contrary, the division
421421 393of medical assistance shall ensure the availability of accessible, quality health care for
422422 394individuals with sickle cell disease who are enrolled in Medicaid managed care organizations or
423423 395accountable care organizations that have a contract with the division to provide services to
424424 396individuals enrolled under MassHealth pursuant to section 9 of chapter 118E of the General
425425 397Laws. Such health care shall include, but not be limited to the following:
426426 398 (1) comprehensive integrated care management for sickle cell disease, including primary
427427 399care, specialized care, and mental health services; 21 of 23
428428 400 (2) sickle cell trait testing and genetic counseling;
429429 401 (3) social work services as well as education on disease management to patients,
430430 402caregivers, and providers; and
431431 403 (4) support navigating health insurance coverage and support with transportation to
432432 404treatment centers.
433433 405 (b) Not later than the fiscal year 2024 contract year, the division of medical assistance
434434 406shall require Medicaid managed care or accountable care organizations to implement a sickle cell
435435 407disease quality strategy for children and adults with sickle cell disease that includes, but is not
436436 408limited to, the following components:
437437 409 (1) measurable goals to improve the identification of members with sickle cell disease
438438 410within 90 days after enrolling in the contracted health plan;
439439 411 (2) to the extent practicable, adequate provider network capacity to ensure timely access
440440 412to sickle cell disease specialty service providers, including, but not limited to, hematologists;
441441 413 (3) care coordination strategies and supports to help members with sickle cell disease
442442 414access sickle cell disease specialists and other related care supports;
443443 415 (4) delivery of a training curriculum approved by the division of medical assistance to
444444 416educate primary care providers on sickle cell disease, including information on emergency
445445 417warning signs and complications, evidence-based practices and treatment guidelines, and when
446446 418to make referrals to specialty sickle cell disease treatment providers; and
447447 419 (5) in the case of an individual who is diagnosed with sick cell disease, exceptions to
448448 420otherwise applicable prior authorization or dispensing limits for pain medications that are 22 of 23
449449 421designed to reduce barriers for such an individual to be able to obtain the appropriate dosage and
450450 422amount of a pain medication in a timely manner.
451451 423 (c) The division of medical assistance shall also do the following:
452452 424 (1) Not later than the fiscal year 2025 contract year, require each Medicaid managed care
453453 425organization and accountable care organization to report, on a quarterly basis, an unduplicated
454454 426count of children and adults identified as having sickle cell disease enrolled with the contracted
455455 427plan during the quarter. The department shall publish these reports, by contracted plan, on the
456456 428department's website.
457457 429 (2) Not later than January 1, 2025, and in partnership with Medicaid managed care
458458 430organizations and accountable care organizations, identify, document, and share best practices
459459 431regarding sickle cell disease care management and care coordination with Medicaid-enrolled
460460 432primary care and sickle cell disease specialty providers with a goal of improving services for
461461 433members with sickle cell disease and their families.
462462 434 (3) Enter into a contract not later than January 1, 2025, with a publicly funded university
463463 435to develop a sickle cell disease-focused comprehensive assessment tool or a supplement to an
464464 436existing comprehensive assessment tool to screen members identified with sickle cell disease for
465465 437comorbidities, medical history for the treatment of sickle cell disease including disease-
466466 438modifying medications and pain management, psychosocial history, barriers to accessing or
467467 439completing treatments, social supports, other care coordinators working with the member,
468468 440community resources being used or needed, quality of life, and personal preferences for
469469 441engagement with a care coordinator. 23 of 23
470470 442 (4) Not later than the fiscal year 2025 contract year, establish performance measures
471471 443relative to access to care and available therapies, engagement in treatment, and outcomes for
472472 444individuals with sickle cell disease, with the metrics to be reported annually by the
473473 445comprehensive health care program to Medicaid managed care organizations and accountable
474474 446care organizations and with incentive payments attached to the measures.
475475 447 (5) Not later than January 1, 2025, develop a plan for improving the transition from
476476 448pediatric care to adult care for adolescents with sickle cell disease who are aging out of the
477477 449Medicaid program, and a plan for helping qualified beneficiaries maintain Medicaid coverage
478478 450under another eligibility category, in order to maintain continuity of care.
479479 451 (d) The division of medical assistance shall provide an annual sickle cell disease
480480 452management and accountability report to the senate and house committees on ways and means,
481481 453including the status of sickle cell disease-focused access to care, quality of services, health
482482 454outcomes, and disparities in the commonwealth.
483483 455 (e) The division of medical assistance shall incorporate the sickle cell disease
484484 456management and accountability standards into its contracts with managed care plans and
485485 457accountable care organizations, including financial or administrative penalties for lack of
486486 458performance. Contracted plan rates must be adjusted to reflect enhanced care or other provisions
487487 459that are shifted to the contracted plans.