2101 METABOLIC DISORDERS

2101.1 Each institution shall make available blood tests to screen each newborn delivered or cared for at the institution for the following metabolic disorders:

1. (a) 2,4-Dienoyl-CoA reductase deficiency;
2. (b) 2-Methylbutyl-CoA dehydrogenase deficiency;
3. (c) 3-Methylcrotonyl-CoA carboxylase deficiency (3MCC);
4. (d) 3-Methylglutaconyl-Coa hydratase deficiency;
5. (e) 3-OH 3-CH3 glutaric aciduria (HMG);
6. (f) 5-Oxoprolinuria (pyroglutamic aciduria);
7. (g) Argininemia;
8. (h) Argininosuccinic acidemia (ASA);
9. (i) Beta-ketothiolase deficiency (BKT);
10. (j) Biotinidase deficiency (BIOT);
11. (k) Carbamoylphosphate synthetase deficiency (CPS def.);
12. (l) Carnitine uptake defect (CUD);
13. (m) Citrullinemia (CITR);
14. (n) Congenital adrenal hyperplasia (CAH);
15. (o) Cystic fibrosis (CF);
16. (p) Galactosemia (GALT);
17. (q) Glucose-6-Phosphate Dehydrogenase Deficiency (G6PD);
18. (r) Glutaric acidemia type I (GA I);

19. (s) Hemoglobinopathy;

20. (t) Homocystinuria (HCY);

21. (u) Hyperammonemia, hyperornithinemia, homocitrullinemia syndrome (HHH)
22. (v) Hyperornithine with gyral atrophy;
23. (w) Hypothyroidism;
24. (x) Isobutyryl-CoA dehydrogenase deficiency;
25. (y) Isovaleric acidemia (IVA);
26. (z) Long-chain L-3-OH acyl-CoA dehydrogenase deficiency (LCHADD);
27. (aa) Malonic aciduria;
28. (bb) Maple Syrup Urine Disease (MSUD);
29. (cc) Medium chain acyl-CoA dehydrogenase deficiency (MCAD);
30. (dd) Methylmalonic acidemia (Cbl A, B);
31. (ee) Multiple acyl-CoA dehydrogenase deficiency (MADD);
32. (ff) Multiple carboxylase deficiency (MCD);
33. (gg) Neonatal carnitine palmitoyl transferase deficiency-type II (CPT-II);
34. (hh) Phenylketonuria (PKU);
35. (ii) Propionic acidemia (PROP);
36. (jj) Short chain acyl-CoA dehydrogenase deficiency (SCAD);
37. (kk) Short chain hydroxy acyl-CoA dehydrogenase deficiency (SCHAD);
38. (ll) Trifunctional protein deficiency (TFP);

(mm) Tyrosinemia type I (TYR I);

(nn) Very long-chain acyl-CoA dehydrogenase deficiency (VLCAD);

(oo) Severe Combined Immunodeficiency (SCID)

(pp) Pompe Disease (also called glycogen storage disease type II or acid maltase deficiency);

(qq) X-Linked Adrenoleukodystrophy (X-ALD);

(rr) Mucopolysaccharidosis Type 1 (MPS1); and

(ss) Spinal Muscular Atrophy (SMA).

2101.2 Each institution shall inform the parent or parents of the availability and purpose of the tests for the conditions set forth in Subsection 2201.1 and shall document in the newborn's health record that the parent or parents were properly informed and understood the purpose of the tests.

2101.3 Each institution shall provide the parent or parents a reasonable opportunity to object to performance of the tests and shall document in the newborn's health record whether the parent or parents consented or withheld consent to have the testing done.

2101.4 Each institution that has obtained parental consent to have the newborn tested shall take from the newborn a blood sample of sufficient quantity to enable a laboratory designated by the Mayor to analyze the sample for the tests identified in Subsection 2201.1, unless an identical test has been performed. Each institution shall send the sample to the designated laboratory.

2101.5 A newborn's parent is indigent for the purpose of § 9 of the District of Columbia Newborn Screening Requirement Act of 1979, effective April 29, 1980 (D.C. Law 3-65; D.C. Official Code § 7-838), if the parent does not have coverage by Medicaid or third party medical or health insurance coverage and has total pre-tax household income, including child support payments, alimony, rent payments received, and any other income received on a regular basis, equal to or less than three hundred per cent (300%) of the federal poverty level.

2101.6 A newborn's parent shall document income to satisfy the requirements of § 2101.5 as follows:

(a) For a person whose source of income is earned income, one of the Public Health and Medicine

following:

(1) Originals or copies of all earnings statements received within the previous thirty (30) days;

(2) A copy of the first two (2) pages of a District of Columbia tax return for the most recent tax year;

(3) A copy of the first page of a Federal tax return for the most recent tax year; or

(4) For a newly employed parent, a copy of an offer of employment that states the amount of salary to be paid.

(b) For a parent whose source of income includes unearned income, one of the following:

(1) A copy of a Social Security or worker's compensation benefit statement;

(2) Proof of child support or alimony received; or

(3) A copy of a Federal tax return for the most recent tax year, including all schedules and attachments.

2101.7 A newborn is a resident of the District of Columbia for the purpose of § 9 of the District of Columbia Newborn Screening Requirement Act of 1979, effective April 29, 1980 (D.C. Law 3-65; D.C. Official Code § 7-838), if the newborn's mother is a resident of the District of Columbia on the date on which the newborn was born.

2101.8 The mother of a newborn shall document residency to satisfy the requirements of § 2101.7 by providing one of the following:

(a) A valid motor vehicle operator's permit issued by the District;

(b) A non-driver's identification card issued by the District;

(c) A voter registration card issued by the District of Columbia Board of Elections and Ethics;

(d) A copy of a lease or a rent receipt for real property located in the District;

(e) A utility bill for real property located in the District; or

(f) A copy of the most recent Federal income tax return or Earned Income Credit Form.

SOURCE: Final Rulemaking published at 56 DCR 7631 (September 25, 2009); as amended by Final Rulemaking published at 60 DCR 3581 (March 15, 2013); as amended by Final Rulemaking published at 64 DCR 13489 (December 29, 2017); as amended by Final Rulemaking published at 70 DCR 000413 (January 13, 2023).