Advocacy

Communicate with your elected officials. Good advocates are informed, patient, and persistent. You are the expert on living with a bleeding disorder – your credibility is key. Build relationships with your legislators. Here is how:

MO All Copays Count Coalition (MO ACCC)

The Missouri All Copays Count Coalition is comprised of members serving the interests of beneficiaries with chronic and serious health conditions that rely on copay assistance in various forms to make medically necessary drug treatments affordable. Ensure #AllCopaysCount by asking your MO state elected officials to support all copays count legislation. 

MO Senators please support Senate Bill 844. Click here for an informational support letter for SB 844. 

MO House of Representatives please support House Bill 1628. Click here for an informational support letter for HB 844. 

Contact info@gatewayhemophilia.org with any questions.

For more information on the All Copays Count Coalition click here.

KMOV 4 interview on Legislation, click here By Deion Broxton Published: Feb. 2, 2024 

KMOV 4 interview,  click here By Deion Broxton Published: Feb. 19, 2024 

MO ACCC- Materials 

Copay Myths v. Facts

The AIDS Institute analyzed annual premium changes in states with copay accumulator adjustment bans and those without. They found no evidence that enacting a copay accumulator adjustment ban has a meaningful impact on average premiums. FAQs-about-HELP-Copays

Reference,https://www.theaidsinstitute.org/state-level/copay-assistance-does-not-increase-premiums*

99.6% of patients utilizing copay assistance have no generic alternatives:

 
 
 
The 2024 report from The AIDS Institute (February 29, 2024) revealed that copay accumulator adjustment policies were still ubiquitous in the ACA marketplace plans in 2024. Missouri received an F Rating, click here for that report. 
 
Imagine if this same practice was applied to college tuition, see an example here
 

Below is from 2/6/24 during our All Copays Count Legislative Day!

Click here for a quick video explaining the issue. 

Find Your Legislators:

Click for Missouri Legislator Lookup

Click for Illinois Legislator Lookup

Find your elected official  in any state!

Communicating with Your Legislator

Do:

  • Your homework – know your district, the issues and your legislators.
  • Develop a relationship – become an informed and trusted resource.
  • Treat your legislators with the same dignity and respect you would expect for yourself.
  • Work with the legislative staff.
  • Develop strong grassroots support. The more people, the greater the impact.

Don’t:

  • Don’t be late.
  • Don’t be rude, offensive or argumentative.
  • Don’t give ultimatums. If a legislator does not support your issue, thank them, ask if there are any questions, if not, move on.
  • Don’t expect to change a legislator’s mind immediately; remember, patience and persistence.
  • Don’t give incorrect information; admit you do not know and offer to find out.

Phone:

Phone calls are most effective when time is of the essence; i.e., a bill is up for a vote in committee. Phone calls can also be used immediately following a favorable vote to extend your appreciation.

  • Ask to speak with the legislator; if this is not possible, spend time with staff.
  • Clearly identify yourself; be sure to say you are a constituent when calling your representative.
  • If you have met before, a reminder may be necessary. This can also help to lead into the reason for the call.
  • Be specific about the reason for the call. Identify a specific bill if possible. Limit your call to one or two issues at a time.
  • Briefly state your position and ask for your legislator’s vote.
  • Ask your legislator’s position on the issue or bill.
  • Offer to provide more information to help your legislator to make an informed decision.
  • Offer to follow up if your legislator is unsure of his/her position at the time of the call.

Letter/E-mail:

Bleeding disorders are complicated. Putting your thoughts in writing will allow your legislator to learn more about access issues before responding.

  • Include your mailing address and phone number on all correspondence. The legislator can contact you with questions or for further information.
  • Avoid using postcards.
  • Keep letters to one issue: short and to the point. Refer to the issue specifically or a bill number, if possible.
  • Clearly state what you want the legislator to do: support a bill in committee; oppose a bill on the floor; offer an amendment.
  • Offer specific information on why the issue is important.
  • Timing is critical. One or two days before a vote is taken is generally best.
  • Ask that the legislator state his/her position in the reply.
  • Don’t forget to follow up calls, letters, and visits with a thank you note.

Visit:

Visits are important on key issues when your legislators’ votes really count. Visits are also important when educating legislators on bleeding disorders. Visits also serve to establish you as a source of information.

  • Call your legislators’ offices or send an email requesting a meeting. Let them know what you wish to speak to them about, and offer two or three alternative times you are available.
  • Always address your legislator as “Representative” or “Senator.”
  • Be prompt, patient and flexible. It is not uncommon for a legislator to be late or to have an interruption during a meeting.
  • Be prepared. Do your homework and practice what you want to say.
  • Be responsive. Be prepared to answer questions.
  • Have something in writing to leave behind, preferably a one-page (front and back) fact sheet with information on your issue and position.
  • Always thank legislators for their time and express interest in keeping in touch, even when they disagree with your position.
  • Sample Thank you

Additional Resources:

For information on National Advocacy Issues with the National Hemophilia Foundation click here and with the Hemophilia Federation of America click here.

Centers for Medicare and Medicaid Services

E-Health Insurance Glossary

Employee Benefits Security Administration

National Association of Insurance Commissioners (NAIC): NAIC is a standard setting and regulatory support organization. Their website includes a map that will allow you to determine the insurance commissioner in your state.

Patient Advocate Foundation (PAF): PAF is dedicated to improving healthcare access. Their website offers education, assistance, and resources related to healthcare coverage.

United States Department of Labor: Includes information on ERISA and COBRA plans.

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Upcoming Events
09/09/2024

Tee off 4 Hemophilia

Start Time: 1:00 p.m. Shotgun Start

The money raised at this tournament will be used to fund the programs and services provided throughout the year to people affected by bleeding disorders. GHA hosts educational conferences specific to bleeding disorders, funds research, supports advocacy, provides educational scholarships, provides emergency financial assistance, dental assistance, medic alerts, bleeding disorder camp, support groups for men, women, and teens. Click here for pricing and registration.

10:30 a.m. Registration / 11:00 a.m. Lunch / 12:00 p.m. Shotgun Start / 5:00 pm..…Reception, Silent Auction & Awards

09/12/2024

NBDF Bleeding Disorders Conference!

NBDF’s Bleeding Disorders Conference brings together families and passionate professionals for in-person education and networking.

NHF’s Bleeding Disorders Conference Info

 

09/20/2024

Gettin’ in the Game Junior National Championship

GHA has been invited to send two individuals with a bleeding disorder between the ages of 7-18 to the Gettin’ in the Game event which will take place September 20-22, in Henderson, NV. Participants will have the opportunity to learn the fundamentals of their respective sport, participate in friendly competition, and have a chance to connect with fellow members of the bleeding disorders community from across the country. Additionally, educational seminars focusing on the importance of physical fitness and other related topics will be available on site. Each participant will have the opportunity to choose either golf, baseball, swimming, or basketball for this year’s JNC.

To be eligible for nomination by GHA, participants must have a bleeding disorder, be between the ages of 7-18, and live in the GHA service area (i.e. southern Illinois, eastern Missouri). Applications are due July 11, 2024. Click here for an application.

chapter of excellence award from national hemophilia association 2017
chapter of excellence award from the national hemophilia association from 2018 - 2020

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