Co-Pay Assistance


Co-pays, co-insurance, and other out-of-pocket (OOP) costs are a significant burden for anyone with an expensive chronic condition like a bleeding disorder. The Affordable Care Act puts limits on how much an insurer can charge in OOP, but those limits are still very high: $7,350 for self-only coverage in 2018 and $14,700 for family coverage. Many people with a bleeding disorder will incur OOP costs up to the maximum early each calendar year.

Fortunately, there are resources available to help families cope with co-pays and other OOP amounts. Various charities and drug manufacturers operate Patient Assistance Programs that may be able to assist you. HFA maintains a regularly-updated list of these programs. Depending on income level, some individuals and families on ACA Exchange insurance plans may also be entitled to cost-sharing reductions.


Some states have considered legislation to restrict the use of manufacturer co-pay cards. The reasoning behind these efforts is that co-pay cards make it painless for patients to choose pricy brand name medications over cheaper generics. HFA and other patient groups have generally been successful, to date, in showing that these arguments don鈥檛 hold up in situations where no generics exist. For individuals with a bleeding disorder, there is no alternative to expensive specialty medications. Co-pay assistance programs offer essential help with unavoidable OOP charges that apply year in and year out.

Separately, some health plans and pharmacy benefits managers have begun to implement accumulator adjuster programs (AAPs) that reduce the value of manufacturer co-pay assistance. You can find a discussion of AAPs here [link].


Navigate patient assistance programs Navigating Patient Assistance Programs:聽With the uncertainty of healthcare, many in the bleeding disorders community are concerned about the future of cost and access to factor products. Co-payments and out-of-pocket expenses can be devastating on a family鈥檚 budget. Many manufacturers of factor products have co-pay assistance programs that can provide a source of relief.
Dear Addy: HFA frequently receives questions from the bleeding disorders community related to advocacy issues. The questions often impact the entire community. In an effort to reach the largest audience possible with our responses to these widely applicable questions, HFA developed 鈥淒ear Addy.鈥 Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance. The following are Dear Addy questions and answers about accumulator adjuster programs, and out of pocket expenses.

Accumulator Adjuster Programs

Info coming soon

Premium Assistance


Many nonprofit organizations around the country offer premium assistance for patients with chronic and expensive disorders.聽High quality insurance with adequate networks and formularies is necessary to preserve access to hemophilia treatment centers and specialized hematologists, and to the services and medications necessary to properly manage a bleeding disorder. Without affordable access to treatment and care, managing a bleeding disorder becomes nearly impossible. The types of plans necessary to adequately cover the cost of a chronic condition often come with a high premium. It is essential to the bleeding disorders community that charities willing to assist our community in affording high quality insurance are able to do so.

Many of these organizations also help patients afford their premiums during times of economic or family crisis such as the loss of a job or primary earner, or while patients transition from their parent鈥檚 plans onto their own.


In March of 2014, the Centers for Medicaid and Medicare Services (CMS) issued an interim rule (which has the force of law) that listed 3 entities that insurance companies MUST accept premium assistance from:

  1. Ryan White HIV/AIDS Programs
  2. Indian tribes and tribal organizations
  3. Federal and State Entities

CMS did not include nonprofit organizations on this list of entities that companies must accept premium assistance from. Many insurers are using that omission to stop accepting payments from 3rd party nonprofit organizations.

Patients around the country with chronic and expensive conditions can no longer receive the help they need to afford their insurance premiums. HFA supports requiring insurance companies on the Marketplace to accept premium assistance payments from nonprofit organizations in addition to the entities already recognized by CMS.

Sign up for E-mails, Dateline Magazine, and other ways to stay connected.