# Presentation: 869098

## Presentation by:
Kay Johnson, MPH, EdM 

President, Johnson Group Consulting

Research Assistant Professor, Department of Pediatrics, Dartmouth Hitchcock Medical Center

**Kay Johnson, MPH, EdM **
**President, Johnson Group Consulting**
**Research Assistant Professor, Department of Pediatrics, Dartmouth Hitchcock Medical Center**

**State Policy and Finance Framework for Newborn Screening Programs: ****Case Studies of Select States**

## Acknowledgements

* **Project officers: *
- Michele Puryear, Chief, Genetics Services Branch, DCSHCN/MCHB/HRSA
-  Lauren Raskin, Director for Maternal and Child Health, Association of State and Territorial Health Officials
*State leaders cooperating in this study:*
- CA - Gil Chavez, Kathy Lottes, and George Cunningham
- MS - Daniel Bender, Daniel Miller, and Gerald McClure
- MN - Dianne Mandernach, Agatha Leitheiser, and Mark McCann
- MD - Arlene Stephenson, Russell Moy, and Susan Panny
- NY - Dennis Whalen and Ken Pass
- OK - Suzanna Dooley and Pam King
- OR - Grant Higginson, Mike Skeels,, Cheryl Hermerath, and Donalda Dodson

## States’ Authority & Challenge

- “*Only public health agencies – with their authority... – could implement systems that would mandate screening for all infants, ensure the quality and availability of testing, and provide follow-up on a population basis*.”  N.A. Holtzman
- State public health agencies face the challenge of financing newborn screening systems, with:
- additional tests and equipment,
- staff skilled in new technology, and
- more effective follow-up with families.

## State Public Health Policy for NBS

*Policy Framework from National Task Force*
- Focus on system, not just a test.
- Policies for adequate funding.
- Professionals/consumers involved.
- Mandates & privacy protections.
- New criteria for adding tests.
- Program guidelines.

## Strategies 

- Framework for Financing

## What needs to be financed?

***Goals from National Task Force*****: **
- Adequate financing for:
**Screening, short-term follow up, ****and**** diagnosis****;**
**Comprehensive care and treatment** for all individuals with conditions identified by newborn screening; and
**Quality assurance** and evaluation.

## Myths about NBS Financing 

***Myth 1: ***NBS programs fully funded by fees.
***In reality***
- Fees typically cover only test/lab costs.
- 5 states and DC _not_ collecting fees.
***Myth 2: ***Tax dollars fund newborn screening.
***In reality***
- 45** **states use fees as core funding for test.
-  Estimated 2/3 paid by private dollars.
***Myth 3: ***NBS paid for by third-party reimbursement.
***In reality***
- Fees not always covered by insurance or Medicaid.
-  Medicaid reimbursements are typically below cost/fee level.

## Distribution of Funds, by Source, 2001

- Source: GAO-03-449. State Newborn Screening Programs.

## State Action 

- What did we learn in this study?

## Study questions:

- How did states address recent challenges?
- State budget shortfalls
- Consumer demand
- Rapid technology change
- Pressure to privatize
- What policies and finance strategies were used to expand and sustain NBS?

## State Selection Criteria - MIX

- Geographic distribution
- Number/type of tests
- Recent expansion, innovation
- Public vs. private labs
- Fee vs. blended funding
- Approaches to follow-up
- One regional lab model

## Overview of Screening Panel

| State | PKU | CH | GAL | MSUD | HCY | BIO | SCD | CAH | MCAD | CF | MS/MS | Hearing |
| --- | --- | --- | --- | --- | --- | --- | --- | --- | --- | --- | --- | --- |
| CA |  |  |  |  |  |  |  |  |  |  |  | 66% |
| MD |  |  |  |  |  |  |  |  |  |  |  | 85% |
| MN |  |  |  |  |  |  |  |  |  |  |  | 92% |
| MS |  |  |  |  |  |  |  |  |  |  |  | 98% |
| NY |  |  |  |  |  |  |  |  |  |  |  | 97% |
| OK |  |  |  |  |  |  |  |  |  |  |  | 94% |
| OR |  |  |  |  |  |  |  |  |  |  |  | 94% |

**Overview of Screening Panel**

****** ****test for condition required by the state as of Febuary 2005**

- Source: NNSGRC, NCHRAM, March of Dimes, state individual reports

## Change in Fees, 1997-2004

***** For two specimens, $28 per specimen.
- Source: NNSGRC, NCHRAM, March of Dimes, individual state reports

| State | Fees 1997 | Fees 2004 |
| --- | --- | --- |
| CA |  $   42.00  |  $  60.00  |
| MD |  $   15.00  |  $  42.00  |
| MN |  $   13.00  |  $  61.00  |
| MS |  $   20.00  |  $  70.00  |
| NY |  $         -    |  No fee  |
| OK |  $   10.50  |  $  73.48 |
| OR |  $   28.00  |  $  56.00  |

## Sources of core funding for:Screening, Short-term follow up, Diagnosis

| State | Fees 2004-2005  | Fee | State | MCHBG | Medicaid |
| --- | --- | --- | --- | --- | --- |
| CA |  $  60.00  |  |  | Not routinely |  |
| MD |  $  42.00  |  |  |  |  |
| MN |  $  61.00  |  |  | Not routinely |  |
| MS |  $  70.00  |  |  | Not routinely |  |
| NY |   |  |  |  |  |
| OK |  $  73.48  |  |  |  |  |
| OR |  $  56.00  |  |  | Not routinely |  |

**Sources of core funding for:****Screening, Short-term follow up, Diagnosis**

## California

- Finance approach
-  Fees pay for program up to diagnosis
- $1 per test form + $59 per baby screened
- Hospitals may charge (keep) $6 for collecting blood
- Challenges in adding tests
- Huge undertaking for 500,000 births
- Success with pilot project on MS/MS
- Delay in expanding test panel due to state budget pressures, now done
- Public health management + private lab capacity

## Maryland

- Finance approach
- Fees cover lab costs
- Increase to finance upgrade of lab equipment
- MCHBG for short and long-term follow up
- Challenges as tests added
- Pediatrix in competition with state lab
- Effective parent informing/consent
- Two screens (repeats)
- Follow-up for many more families
- State budget pressures

## Minnesota

*“****hit the restart button****”*
- Financed a new approach with fee increase
- Focused on family as customer
- Expanded number of tests
- Created new public-private partnership
- State lab (initial screening)
- Mayo Clinic (MS/MS screen and specialist care)
- University of Minnesota (coordination & specialist care)
- Structured linkages to medical home/primary care pediatricians

## Mississippi

- Expansion to “comprehensive screening”
- Finance approach
- Did fiscal analysis, doubled fee $35  up to $70
- Hospital charges vary, insurance & Medicaid pay through global payment for birth
- Political pressure to change
- Parents and others through legislature
- Recommendation of Genetics Advisory Committee
- Lab services
- No state lab capacity (formerly used Tenn.)
- Found desired services & price with Pediatrix
- More PH follow up staff in each health district

## New York

- Finance approach
- Not fee-based program
- Public health dollars directly finance NBS
- Change and challenges
- Advocacy by parents and other organizations (MOD, AAP) stimulated interest of Governor & legislature
- State budget pressures ongoing
- 3-year push to add cystic fibrosis testing in 2003
- Large scale effort -250,000 births, 3,800 positive screens
- Laboratory leadership, centralization
- Innovations to link primary and specialty physicians

## Oklahoma

- Finance approach
- Fee increase to do more tests
- Medicaid and private insurance billing
- Legislative commitment to financing
- Small HRSA grants to plan for innovation
- Political pressures & opportunities
- Genetics Advisory Committee strong role
- Parents and others advocate to legislature
- Medicaid agency and hospitals involved
- Expanded tests, implemented 2005
- More public health staff for follow-up

## Oregon

- Finance approach
- Fee-based budget
- Fees are collected at the time prepaid kits are ordered.
- Reconsidering allocation for lab vs. follow up
- Change process
- In 2001, legislature approved adding 20 disorders
**Not yet cystic fibrosis:** created a task force to guide decision.
- Regional lab is a vendor
- Regional lab for 5 states (AK, HI, ID, OR, and NV)
- Region with unique geographic access challenges
- Adapting to variation, promoting equity
- Regional synergy, economies of scale

## Strategies 

**What factors are enabling states to expand and sustain  newborn screening programs?**** **

## What did these states do?

- Focused on a system, not just test
- Expanded number of conditions
- Invested in state-of-the-art tests
- Financed more follow up
- Engaged parents/advisors
- Negotiated quality; privacy issues

## Creating a Climate for Change

- Genetics planning grants
- Integration grants
- National Newborn Screening & Genetics Resource Center
- Demonstration projects
- Regional collaboratives
- National Advisory Committee
- Laboratory quality control

- Parents
- March of Dimes
- State Genetics Advisory Committees
- Health professionals (AAP, AAFP, etc.)
- Condition-focused support groups
- Pediatrix

**Action & advocacy** **by:**

**Federal system support** **through:**

## Factors affecting Future

- Adding MS/MS capacity in the lab is simple, compared to the fiscal, ethical, and system of care (follow-up) decisions.
- NBS follows in wake of genetic science
- Technology is driving change, how to adapt?
- Introducing profit into newborn screening programs has changed everything.
- What does it mean when private lab takes funding but not the public health role?
- Like Medicaid managed care,  requires oversight

## Political Pressures & Finance

- The political pressure is against increasing health care costs.
- Legislators may say:
- Nice idea but we cannot afford it.
- Good idea, do it (with no new resources)
- Health insurance plans and Medicaid may come forward to say this will drive up costs.
- Fiscal constraints often drive policy instead of policy driving fiscal decisions.

## NBS Finance Survey(preliminary results, n=30)

**Source of $**

**Recipient $**

**  ****Change $**

**Who led**

## Without a broad, inclusive panel of tests established by states:

*“**Parents may go from doctor to doctor seeking a diagnosis (for their child) and generating costs, without being prepared for the outcome.  *
*If you miss a child and miss the opportunity for intervention, the costs are much higher.  *
*Program managers have to look at all of the costs and make judgments that balance the interest of individual child and the public. *
*We are not (just) spending taxpayers money.”*

## Goals for NBS Today?

- Every baby, regardless of where born, has access to newborn screening (NBS).
- Every child receives screening, diagnosis, and needed treatment.
- New consensus on criteria for adding tests to NBS programs achieved.
- NBS programs meet quality standards.