Amy J. Oliver, J.D. National PKU Alliance Vice President Kristen Vanags Georgia PKU Connect

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1 Amy J. Oliver, J.D. National PKU Alliance Vice President Kristen Vanags Georgia PKU Connect

2 Advocacy means speaking and acting on behalf of yourself or others. Advocacy is also about educating people around you. Advocacy is simply telling your story.

3 Advocacy is important because you and your loved one are important! When you have PKU or have a loved one with PKU, you are the person with the knowledge and information about what you or your loved one needs. You are in the best position to communicate that information to people to obtain the needed support and services.

4 Advocating means taking the responsibility for telling people what you need and doing it in a straightforward way. You advocate by taking a proactive role and speaking up. If you don t tell people what you or your loved one needs, they can t provide it.

5 Federal and State Exchanges under the Affordable Care Act State insurance mandates on private insurers Federal insurance programs: Medicare, Medicaid, CHIP, and Tricare NPKUA efforts to pass the Medical Foods Equity Act in Congress

6 Affordable Care Act Medical Foods are covered in the 38 states that have insurance mandates. The coverage will follow the specific state mandate. The insurance exchanges will not provide any medical foods coverage in the following states: Alabama, District of Columbia, Georgia, Illinois, Iowa, Kansas, Michigan, Mississippi, Ohio, Oklahoma, South Carolina, Virginia, and West Virginia.

7 38 states currently have state insurance mandates that require private insurance companies to cover medical foods. Each state s law is different: Some include both formula and low pro foods. Some have age limits or dollar limits. State insurance mandates only apply to insurance plans regulated by states this does not include ERISA or self-funded or self-insured plans.

8 Medicare is insurance for people over the age of 62 or who are disabled (as determined by the Social Security Administration). Medicare does not provide any coverage for medical foods as a general matter. In only a few cases, has Medicare provided coverage for formula.

9 You or your child may qualify for free or low-cost coverage through Medicaid. Some states expanded Medicaid eligibility in 2014, so you and/or your child may qualify even if you have been turned down for Medicaid in the past. Find more information here: However, Medicaid may not cover medical foods for adults. If you are an adult over age 21 with PKU and you are eligible for Medicaid, you will need to contact your state Medicaid program to find out if it covers medical foods.

10 Your child may qualify for free or low-cost coverage through the Children s Health Insurance Program (CHIP) income qualifications vary by state. You can apply for and enroll in CHIP any time of year. If your child qualifies, your coverage can begin immediately. CHIP provides coverage for medical formula. More information is available here:

11 Tricare is insurance for members of the military and their family. Tricare covers formula for military spouses with PKU and children of military members with PKU. People with PKU are generally not eligible to join the military.

12 The Medical Foods Equity Act (MFEA) is a federal bill currently pending in Congress. The MFEA would require all federal programs to cover formula and low protein foods for PKU. This means Medicare, Medicaid, Tricare, CHIP, and the federal employee program would cover treatment regardless of age. We believe that if the federal programs cover medical foods, private insurance companies will do the same.

13 In order to get the MFEA passed and achieve better insurance coverage for medical foods, we all need to work together on the national level. We are in this together! As members of the PKU community, we can improve insurance coverage for everyone. We need everyone to contact their member in the House of Representatives and ask him/her to join as a co-sponsor of the MFEA.

14 Does your phone call, , letter or visit really make a difference? YES! Your elected officials are there for you, their constituent. Elected officials make decisions based on what they believe their voters want.

15 Make a phone call! Review the NPKUA talking points available at uityact.aspx Ask to speak to the Health Legislative Aide. Tell them who you are and why you re calling. Ask the elected official to support your position on the issue (such as co-sponsor the Medical Foods Equity Act). Thank them for their time. Follow up with a letter or .

16 Write an or letter! Review the NPKUA talking points available at uityact.aspx. Identify yourself and your connection to PKU. Request that the elected official join as a cosponsor for the Medical Foods Equity Act. Explain why the elected official should co-sponsor the MFEA. Thank the elected official for their consideration. Tell them that you look forward to their response.

17 Schedule a meeting! Every member of the House of Representatives has a local office in your state. Call the local office and request a meeting during the August recess. Before the meeting, review the NPKUA talking points. yact.aspx Bring handouts and props (a can of formula). Tell the elected official or the staff member why they should co-sponsor the Medical Foods Equity Act. Thank them for their time. Follow up immediately with an and then a letter.

18 Key points to remember when communicating with elected officials and their staff: They want to hear from you! Tell them your personal story this will have the biggest and most lasting impact.

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