Co-Pay Accumulators

Co-Pay Accumulators: The Newest Challenge to Accessing Affordable Care

Life with hemophilia has sometimes resembled a roller-coaster ride. In the early days, there were no truly effective treatments and a diagnosis of hemophilia meant uncontrolled bleeding, horrific joint damage, and far too often, an early death. The development of treatments like cryoprecipitate and later clotting factor replacement therapies were revolutionary. While not a cure, these products for the first time made it possible for people with hemophilia to lead longer, healthier lives. Tragically, it wasn’t long before the roller-coaster plummeted again. It turned out that the clotting factor products were tainted with blood-borne pathogens from the plasma used in the manufacturing process. More than half of all people with hemophilia were infected and most lost their lives.

Today, while still not a cure, products are very safe and effective, with new and improved products coming out on a regular basis. The challenge: how does it get paid for? If you can’t get your product, it might as well not exist, and down goes the roller coaster again.

Hemophilia drugs are expensive. This is partially a function of the amount of research and development involved, and partly a function of the small size of the hemophilia population. There are no generics, and without adequate reimbursement, there would be no incentive for manufacturers to develop new and better products. This issue resonates particularly with the hemophilia B community, who for the first time in history have a range of life-saving products intended for their factor IX deficiency. Unfortunately, insurance companies don’t like paying for them, and have often done everything in their power to avoid having to do so. The Affordable Care Act (ACA), also known as Obamacare, went a long way towards requiring payers to “do the right thing,” but the current political climate has taken the teeth out of the ACA, leaving insurance companies to go back to their old tricks while introducing some new tricks.

The latest strategy that insurance companies and the pharmacy benefit managers they employ have started to introduce is something called co-pay accumulators or accumulator adjustors. These accumulator programs have the potential to make hemophilia treatments unaffordable for many patients. Therefore, it is of utmost importance that everyone potentially affected understand what they are, what kind of impact they may have on access to care, and what we all can do about them. The following Q&A explains the most important things about accumulators we all need to know.


Q: What is a co-pay accumulator?

A: Many health insurance policies require covered patients to pay a portion of the cost of their medicines until an out-of-pocket maximum for the year has been reached. With expensive therapies like those for hemophilia, this maximum will almost always be reached, costing the patient many thousands of dollars. For a lot of families and individuals, this amount is simply more than they can afford, threatening them with financial ruin and lack of access to treatment. This problem has been addressed through the introduction of co-pay assistance programs, in which drug companies and/or third-party nonprofits cover all or part of the co-payment costs. It’s a practical solution to a real problem. Enter the accumulator adjustor.

Under these programs, any payment made on behalf of a patient by a third party is NOT counted towards the out-of-pocket maximum, leaving the patient with the same problem the co-pay assistance programs were intended to solve.

For example, let’s say someone has a policy with a $5,000 out-of-pocket maximum, and that a drug manufacturer or other third-party organization pays that $5,000. In the past, that patient was considered to have met their out-of-pocket maximum, leaving the insurer to pay all covered costs for the remainder of the year. Now let’s say that the insurer introduces an accumulator adjustor program. Suddenly, the $5,000 in co-pay assistance paid by the third party is no longer counted against the out-of-pocket maximum because the funds did not literally come out of the patient’s pocket! The patient is held responsible for the $5,000 and may have difficulty accessing treatment until the amount is paid.

Q: Why are insurance companies doing this?

A: Well, that partly depends on who you ask. Insurers claim that co-pay assistance programs are just a way for pharmaceutical companies to sell their products at high prices. They also claim that without shifting more of the financial burden to the end consumer, patients will have no incentive to use cheaper generic drugs or avoid trying drugs they may not really need. However, these programs allow insurance companies to increase their already substantial profits be essentially “double dipping,” i.e. collecting the co-payment once from the third party and again from the patient.

While this strategy may have limited validity for some disease states, it is NOT appropriate for many chronic, rare disorders like hemophilia. There are no generic treatments for hemophilia, so no “lower cost alternatives” are available. Furthermore, hemophilia treatments have been proven over and over to be highly effective when dosed adequately as determined by an appropriate clinician in consultation with the patient. No one would ever use a hemophilia treatment if they didn’t need it. Finally, even a significant reduction of the cost of treatment would not alter the impact of a large co-payment on patients.

Q: How do I know if my insurance company has introduced, or is contemplating the introduction of an accumulator adjustor?

A: Often, an insurance company will inform patients by letter of the introduction of an accumulator adjustor, so make sure to read your mail. You can also call your insurer and ask. They should be able to tell you and asking is not going to make them suddenly introduce one. During open enrollment, be sure to review all plan documents to determine whether or not your insurance plan has implemented an accumulator adjuster program. Finally, if you know your co-payment was paid by a third party but the insurer tells you that you still owe your full out-of-pocket maximum, there’s a pretty good chance they are using an accumulator adjustor. Don’t be afraid to ask questions!

Q: What can I do about this problem? I’m just one person.

A: Firstly, you are not just one person. You are part of a small but vocal and highly effective community of advocates who don’t take no for an answer when it comes to access to healthcare. The Coalition for Hemophilia B has a program called the B Voice, designed to give our members ways to influence policies that affect our health and our lives. You can learn more and get involved by visiting

Other national organizations are actively involved in this issue. They include the National Hemophilia Foundation ( ), the Hemophilia Federation of America ( ), and the National Organization for Rare Disorders ( ). Each of these organizations offer additional information on this issue, resources, and ways to take action. You might also want to contact your local chapter or association, or the social worker at your treatment center. They may have particular experience dealing with the payors in your area.

One of the most important things you can do to help national and local organizations fight on your behalf is to share your story. If you think your insurance company is either already using or thinking about using an accumulator adjustor, don’t keep it a secret! Let the Coalition for Hemophilia B as well as the other aforementioned organizations know what’s happening. That way, we know exactly where this problem is rearing its head and we are better equipped to do something about it. Our strategies going forward will include things like educating the payors so they understand why hemophilia is different, as well as alerting state insurance commissioners to the severity and possible outcomes of this vexing problem.

Together, there is no problem we cannot solve. Together, we can truly make a difference.