State Laws and Policies

This list includes laws and policies known to National PKU News and is not a comprehensive list. It does include all laws passed since 1994. Information about policies in some states is incomplete.

We would be delighted if people would send us information about the situation in their state, correct us if any of this information is incorrect, and add missing information! We hope to keep this list as updated as possible, for the benefit of everyone. Please write to: National PKU News, 6869 Woodlawn Ave. NE #116, Seattle, WA 98115. E-mail: schuett@pkunews.org .

  Bill/Date Adopted Diet Coverage Coverage Metabolic Disorders Limitations
State   Formula Foods State Insurance PKU Others $ for food, per person Age (years)
Alabama   No19 No No No NA NA NA NA
Alaska SB 313/May 91 Yes No No Yes Yes No NA No
Arizona HB 2043/April 00 Yes Yes No Yes Yes Select 50% up to $5000 No
Arkansas HB 183/April 99 Yes Yes No Yes Yes Yes20 $2400 annual tax credit per child (food or formula) Yes1
California SB 148/Jan. 99 Yes Yes No 2 Yes 3 Yes No No No
Colorado HB 01-1156/June 01 Yes No No Yes Yes Yes NA Formula age limit: 21 for males, 35 for females. Food limitations: None.
Connecticut HB 7040/Oct. 97,
SB 524/Oct. 01
Yes Yes No Yes Yes Select No No
Delaware SB 78/July 08 Yes Yes Yes No Yes ?   Women through child bearing age, Men to age 21.
Florida HB 853/May 95 Yes4 Yes4 Yes5 Yes Yes Select $2,500 24
Georgia   Yes              
Hawaii HB 326/Jan 99 Yes Yes No Yes Yes Yes6 No No
Idaho IDAPA 16.02.26 / July 97 Yes No Yes Not mandated, some cover. Medicaid covers. Yes No No No
Illinois   Yes No Yes No Yes Yes NA No
Indiana IC 27-13-7-18 Yes No Yes 7 Yes8 Yes Yes NA NA
Iowa   Yes No based on income some Yes ? No No
Kansas HB 2255/April 97 Yes Yes No No Yes MSUD $1,500 9 18
Kentucky HB 395/April 02 Yes Yes Yes Yes Yes All $4,00010 No
Louisiana Act 1013/Jan 01 Yes 17 Yes 17 Yes Yes Yes Yes $200/month None
Maine HB 401/Feb 95 Yes Yes No 11 Yes Yes Select $3,000 No
Maryland HB 509/May 95 Yes Yes No Yes Yes Select No No
Massachusetts HB 5622/Nov 93 Yes Yes No Yes Yes Select $2,500 No
Michigan   Yes No Yes No Yes ? NA No
Minnesota 256B.0625/? Yes Yes12 No Yes Yes No No No
Mississippi   Yes No Yes 13 No Yes No NA 18
Missouri SB1026/June 02 Yes Yes Yes Yes 14 Yes Yes $5000 for food 6
Montana HB 266/April 99 Yes Yes No Yes Yes Yes No No
Nebraska LB 610/April 98 Yes Yes Yes Yes Yes Select $2,000 No
Nevada AB 394/July 97 Yes Yes Yes Yes Yes Select $2,500 21
New Hampshire HB 1431/Aug 95 Yes Yes Yes Yes Yes Select $1,800 No
New Jersey SB 1887/Dec 97 Yes Yes No Yes Yes All No No
New Mexico HB 0289/July 03 Yes Yes Yes Yes, but limited Yes No NA None
New York AB 352B/1997 Yes Yes No Yes Yes All $2,500 No
North Carolina 130A-125, S.L./July 97 Yes No Yes No Yes All NA No
North Dakota SB 2239,
HB 1012/Aug 01
Yes 15 Yes Yes 15 Yes Yes MSUD $3,000 food and formula Yes15
Ohio Legislation pending Yes No Yes No Yes Homocystinuria NA No
Oklahoma   Yes No Yes No Yes Select NA 21
Oregon HB 2388/May 97,
SB74/July 03
Yes Yes No Yes Yes All No No
Pennsylvania SB 7059/Dec 96 Yes No No Yes Yes MSUD/Select NA 21 for males
Rhode Island   Yes Yes Yes No Yes ? ? ?
South Carolina Legislation pending Yes No Yes No Yes Select No No
South Dakota SB 89/Mar 92 Yes No No Yes Yes ? NA No
Tennessee HB 165/July 96 Yes No No Yes Yes Select NA No
Texas TX Insurance Code Article 3.79/Sep 89, amended Apr 99 Yes No No Yes Yes No $3500 (formula) No
Utah HB 205/Feb 98 Yes16 Yes16 No Yes Yes Select No No
Vermont SB 253/Oct 98 Yes Yes No Yes Yes ? $2,500 No
Virginia HB 0452/March 00 No No18 No No Yes ? $2,000 18 (but pregnant women any age), College age for food.
Washington   Yes No Yes No Yes Select NA No
West Virginia   Yes No Yes No Yes Galactosemia NA No
Wisconsin Act 157/Mar 83 Yes Yes Yes No Yes Yes No No

1 Arkansas: State funds limited to those 21 years old or less with some exceptions.

2 California: The state has other programs, such as CA Children's Services and the Genetically Handicapped Persons Program, that provide food and formula if the person has no insurance or has a policy that does not cover them, based on income.

3 California: Required to cover costs of food and formula to the extent that the cost exceeds cost for a "normal" diet.

4 Florida: Only available with special rider and increased premium on insurance. Not covered by HMO's.

5 Florida: The state provides a number of medical foods free of charge to all PKU patients regardless of age.

6 Hawaii: Disorders of amino acids, organic acids, carbohydrate and fat metabolism.

7 Indiana: State sliding fee scale, cap of $1000 out of pocket.

8 Indiana: MCOs cover formula some of the time, not most of the time. Medicaid, WIC and Children's Special Health Care Services all cover formula but not food.

9 Kansas: $1000 limitation for food applies if making less than $300 over national guidelines for poverty.

10 Kentucky: Cap on food: $4000; Cap on formula: $25,000; All metabolic disorders covered.

11 Maine: No state coverage except for those under age 18 and income eligible; also limited support for those not covered by state or insurance.

12 Minnesota: Not specified in statute but the law has been interpreted by the Minnesota Depts. of Commerce and Health to cover low protein foods.

13 Mississippi: Requires financial qualification for Children's Medical Program.

14 Missouri: State law exempts all private insurance companies. If your insurance company denies coverage, the state has income restrictions.

15 North Dakota: insurance law covers anyone born after Dec. 31, 1962. Up to age 21, or for maternal PKU, formula is already provided under a state program. The Dept. of Human Services will provide formula free of charge for all males through age 21 and all females through age 44. Formula can be purchased at cost by individuals over the approved age limit. The Dept. will provide some low-protein foods, only for persons with Medicaid/Medicare coverage.

16 Utah: Deductible and co-pay for major medical insurance.

17 Louisiana: Formula is covered by insurance, Medicaid, and an additional state program. A state law only mandates coverage of food by insurance. The state program does not cover food.

18 Virginia: State program helps pay for food.

19 Alabama: Alabama Medicaid pays for formula but not low protein foods.

20 Arkansas: PKU, galactosemia, organic acidemias or disorders of amino acid metabolism are specifically covered.

 


Last update: August 2011
National PKU News:
www.pkunews.org
E-mail: schuett@pkunews.org