BDAI’s Advocate Ambassador Volunteer Program

BDAI’s Advocate Ambassador Volunteer program is geared toward building positive

relationships with constituents and legislators at the state and federal level.

Becoming an Advocate for BDAI will continue to ensure our needs are met by gaining access to

healthcare and medication. Sharing personal experiences and policies that affect the Bleeding

Community is key.

Ambassadors serve as the strong point of contact with our elected officials. BDAI staff works

together with ambassadors to help implement initiatives.

Ambassador Roles & Responsibilities

I. Establish and maintain relationships with legislators

Ambassadors are asked to schedule regular in-district meetings building rapport, educating

about bleeding disorders – and when appropriate - request action on the Illinois bleeding

disorders community’s advocacy priorities. These meetings are a critical step in strengthening

our relationship with all our elected officials.

Sample Actions

• Send letter or email of introduction to assigned elected officials

• Request to be included in district mailings and e-newsletters of elected officials

• Participate in district office visits

• Track and attend town halls and other community events

II. Recruit others to participate in our advocacy work

Encouraging and recruiting others to participate in local advocacy activities helps to promote

acceptance and understanding of people with bleeding disorders to our state and federal

representatives. With more volunteers and a wider array of advocates, Ambassadors help to

highlight the diverse issues around inherited bleeding disorders, the needs of our local

community and the political power of advocates with rare chronic illnesses like ours.

Sample Actions

• Recruit and train additional volunteers to attend district meetings and events

• Attend BDAI sponsored event sharing your successful efforts with others

III. Support social media and other press opportunities

The media - newspaper, radio, television, and social media - is a critical tool in promoting our

advocacy issues. Messages carried by Ambassadors can influence legislators and the public.

Telling your story is the powerful tool we have in this work.

Sample Actions

• Submit "letters to the editor" to local news outlets regarding specific legislative priorities

• Participate in media interviews within congressional target area(s)

• Post comments on local media websites

• Post and share BDAI action alerts on social media

• Capture your work as an ambassador on social media with pictures and posts

IV. Report on congressional district activity, meetings, and events

Ambassadors assist with and contribute in large part to our chain of communication with

elected officials. Ambassadors record and report on all advocacy work in a timely manner.

Sample Actions

• Participate in Ambassador trainings and conference calls

• Inform BDAI staff of requests for clarification and information from legislators and/or

their staff within 24 hours of contact

Estimated Time Commitment & Qualifications

Ambassadors must be able to commit to a one-year term. Terms are renewable through an

annual re-application process.

Ambassadors should expect to dedicate 2-4 hours per month volunteering in this role. Time

commitments will vary depending on the month and legislative issues. For example, more

hours may be needed in the Spring when the State Legislature is in session – and also during

March for Bleeding Disorders Awareness Month. While our Advocacy Program is year-round

less may be needed at other times of the year.

Ambassadors receive direct staff support

The Ambassador Program is managed by BDAI staff. Our team supplies Ambassadors with

compelling and relevant information, trainings, and updates to empower advocates to make a

lasting impact for the bleeding disorders community.

Support Includes

• Regular updates highlighting our advocacy initiatives at the state and federal levels

• Ongoing skill development and communications through Zoom Conference Calls

• Special training sessions at various BDAI activities

Priority 1: Access to Care Concerns by Medicaid Managed Care Organizations (MCO)

Ever since our population has been moved to the MCO’s from fee-for-service Medicaid, our patients have received sub-par and sometimes dangerous care from the MCO Specialty Pharmacies(SP).

Patients are not given a choice in many instances to use their HTC even when the HTC is allowed to serve the patients, delays in authorizations for drug and lack of understanding of the disease state by MCO.

Prior Authorization Departments causes dangerous delay in receiving their clotting factor. These delays can cause irreparable joint damage due to pooling blood destroying the joint tissue. In emergent circumstances – for instance a head bleed (ICH) – HTC Center Physicians are forced to send patients into the Emergency Room for their medication where the state will pay a considerable markup (possibly up to 10 times up to the rate the HTC rate would charge for this drug) as well as the ED facility fee and physician fee.

Proposed Solution: We are asking the state legislature to require all MCO’s to abide by the state Standards of Care Act (SOCA) – currently in place – regarding treatment of persons with hemophilia or related blood disorders.

Priority 2: We are increasingly seeing insurance plans carving out hemophilia and other specialty drugs to a single source provider – which is many times a wholly owned Pharmacy Benefit Manager of the plan itself.

When this does occur many, if not all, of the same problems above are occurring, with the same cost implications.

Proposed Solution: Here it will require legislation to protect our patients.

The Rare Disease Commission was established in 2016 to advise the State on issues pertaining to the care and treatment of individuals with rare diseases. We thank the legislature for the support of this Commission and ask that you support its as it moves forward providing an important resource to the state for the care and treatment of persons with rare diseases such as hemophilia and other inherited bleeding disorders.

The Accumulator Adjuster Prohibition for drugs with no generic alternative is vitally important to our community. On June 26, 2019, the Illinois legislature passed a copay accumulator bill and sent it to the governor for his signature. This made Illinois the fourth state restricting the use of copay accumulator policies. This bill allows the use of Co-Pay Cards towards our patients’ annual maximum out-of-pocket when a generic equivalent is not available. We would like to thank the legislature for their continued support of this prohibition and ask that it remain in place as it is. View the video below to learn more about accumulator adjusters.