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HFM Advocacy
Advocacy is a key part of the mission of the Hemophilia Foundation of Maryland (HFM). HFM works to educate elected officials and other key stakeholders about hemophilia and other related inherited bleeding disorders. Every year HFM hosts our Advocacy Training and Maryland Days where constituents from around the state gather for training and meetings with their elected state officials to share their story and educate them about current issues affecting the hemophilia/bleeding disorders community. HFM also participates in the National Hemophilia Foundation’s annual Washington Days. This event provides an opportunity for constituents from across the nation to come together to learn about advocacy, discuss key issues impacting access to care, meet with elected officials, and put a face on hemophilia/bleeding disorders.
Want to Support HFM?

Want to join our efforts but not sure where to start? Make a donation, join our Foundation as a member or volunteer your time and take advantage of this incredible opportunity to lend your support. These are great ways to contribute to our causes, and every little bit goes towards supporting the mission of the Hemophilia Foundation of Maryland.

Help is Our Main Goal

We influence those who make a difference

We have a stated mission to advocate on behalf of our members. Advocacy happens every day and there are many ways to participate in advocacy activities throughout the year, including:

  • Writing letters to your elected officials regarding proposed changes to law or regulations
  • Meeting with other state decision-makers, including state departments of insurance and Medicaid agencies
  • Educating health plans about the needs of the bleeding disorders community
  • Educating schools and employers about the needs of the bleeding disorders community
  • Advocating to your health care provider about your unique health care needs

If you are interested in learning more about advocacy and becoming a better advocate, take a few moments to explore the tools and resources below:

Maryland State Resources

Copay Accumulator Patient Impact:

In the age of high deductibles and patient out of pocket expenditures, more and more people depend on copay assistance to afford their life-saving specialty medications. This video demonstrates how Copay accumulator adjustments affect patients requiring specialty medications with no generic alternatives. Learn more at hemophilia.org

Hemophilia Foundation of Maryland (HFM)

13 Class Court Parkville, MD 21234

Upcoming CareFirst Formulary Updates and Medications Added to Prior Authorization List

Carefirst has issued a Medical Preferred Drug Strategy Update effective August 1, 2024.  Below is a summary of the factor agents affected. 

What this means for affected patients:

  • If a patient is taking a non-preferred medication, they can continue to take that medication until the current prior authorization expires. 
  • If a patient needs to continue medication therapy with the non-preferred medication, their doctor can submit a new prior authorization upon the expiration date of the current prior authorization. 
  • The new prior authorization may result in an approval for an alternative, preferred medication, which is as clinically effective and safe as the non-preferred medication.
  • If their doctor believes the non-preferred medication must be continued, their doctor can submit information within the new prior authorization request to obtain a medical necessity exception.

To learn more, click here. 

    New Federal Rule Strengthening Protections Against Disability Discrimination

    May 14, 2024 – By BD SUMHAC, HFA, and NBDF

    Progress Alert! After advocacy from the bleeding disorders community, the U.S. Department of Health and Human Services (HHS), through its Office for Civil Rights (OCR), finalized a new rule that increases equity and access to behavioral health facilities for people with bleeding disorders.

    The new rule, entitled Discrimination on the Basis of Disability in Health and Human Service Programs or Activities, clarifies that the protections afforded to people with disabilities (including people with bleeding disorders) under Section 504 of the Rehabilitation Act of 1973 (Section 504) apply to medical settings.

    Read BD SUMHAC’s full statement on the new 504 rule!

    Advocacy HFM

    HFM Advocacy: Accumulator Adjustment Programs

    Make all Copays Count!

    Many bleeding disorder patients use co-pay assistance, such as co-pay cards or manufacturer coupons, to pay for their life-saving medications. Pharmacy benefit managers (PBMs) and insurers increasingly use co-pay accumulator programs to prevent such assistance from counting towards patient cost-sharing, such as their deductible or annual out-of-pocket maximum. As a result, patients may struggle to afford and adhere to their medications as insurers and PBMs seek to shift more cost-sharing responsibilities to patients.

    The Issue

    Accumulator adjustment programs prevent any co-payment assistance that may be available for high-cost specialty drugs from counting toward a patient’s deductible or maximum out-of-pocket expenses.

    Many pharmaceutical manufacturers offer co-pay cards that help cover a patient’s portion of drug costs. Traditionally, pharmacy benefit managers have allowed these co-pay card payments to count toward the deductible required by a patient’s health insurance plan. With an accumulator adjustment program, patients are still allowed to apply the co-pay card benefits to pay for their medications up to the full limit of the cards, but when that limit is met, the patient is required to pay their full deductible before cost-sharing protections kick in.

    Patients are often unaware they are enrolled in one of these programs until they go to the pharmacy counter and realize they must pay the full cost of their medication, leading them to abandon or delay their prescription. These programs can be called different names, are often marketed as a positive benefit, and are usually disclosed many pages into plan materials, leading to a lack of awareness about them to patients.

    Example: It’s the start of a new health plan year in January, and you are on a biologic with a list price of $3,000 a month. You use your co-pay card at your specialty pharmacy and make a regular co-payment. By the time March arrives, you’ve reached the limit on your co-pay assistance. As a result, when you refill your prescription in April, you will owe $3,000, the full cost of your drug, because the deductible has not yet been paid down.

    The Solution

    When calculating a patient’s overall contribution to any out-of-pocket maximum or any cost-sharing requirement, a health plan must include any amounts paid by the patient or paid on behalf of the patient by another person.

    The Trends

    People most likely to be enrolled in co-pay accumulator adjustment programs include those with employer-sponsored insurance plans, particularly individuals enrolled in high-deductible health plans (HDHPs). HDHPs have become increasingly popular as employers and insurers seek opportunities to incentivize appropriate health care utilization and to lower costs.

    *Source: American Journal of Managed Care, Impact of a Co-pay Accumulator Adjustment Program on Specialty Drug Adherence

    Our Work

    The All Co-pays Count Coalition (ACCC) was formed to collaborate amongst the patient and provider community around legislative and patient education efforts on a federal and state level. Hemophilia Foundation of Maryland is a member of the ACCC.

    We are looking for community members who have been impacted by a Copay Accumulator Adjustment Program.  Please email HFM.