By Shelby Smoak, PhD
I’ve said this before, even in this newsletter, but I will say it again: Anyone with a chronic illness must become their own best advocate.
Sometimes this advocacy comes in the form of promoting for our needs with a physician or other health care provider. To all the phlebotomists who I see several times in a year, I thank you for listening to my unending requests to use 23g needles over the much larger, standard 16g.
Advocacy is personal and constant. Sometimes however, advocacy requires more of a public, social dynamic. This article addresses that aspect, asking that everyone with an expensive chronic condition join in a push against the looming dominance of Copay Accumulator Adjuster policies.
As we move into the new year, we need to be wondering: Is there an accumulator adjuster policy in my 2021 insurance plan? Finding the answer and making a personal decision about your plan choice based on an accumulator adjuster is still an example of private, personal advocacy, and is of vital importance to your continued access to affordable health care.
In our last BioMatrix newsletter, we published a full spread on Copay Accumulator Redux and on navigating those in 2021. I won’t revisit that information, but if you missed it, you can read it online at https://www.biomatrixsprx.com/bleeding-disorders-publications (BioMatrix News - Volume 15, Issue 4)
Let’s take this piece of the insurance forward and consider how you can transform personal advocacy on copay accumulators into state and national advocacy.
Why should I advocate for ending copay accumulator adjuster insurance policies?
There are several reasons 2021 should be a year to advocate against copay accumulator adjuster policies:
New rules have allowed insurers to apply these policies more freely and widely, making it more likely community members will be impacted.
Accumulator policies can make medicines unaffordable for many families, putting their health at risk.
Accumulator policies can jeopardize the financial well-being of a family, forcing them to choose between paying for life-saving medicines or for food or bills.
Advocacy will be required at the state and federal level, as these oversee different insurance plans.
There is currently no other issue that would perhaps put people with chronic illness at greater financial or health risk than this.
Advocacy here helps you, your family, and everyone in the rare disease community who depend on medications without generic alternatives.
How do I become a state advocate?
A great place to start flexing your advocacy is at the state level. Already four states—Virginia, West Virginia, Illinois, and Arizona—have passed copay accumulator bans, all of which were achieved through advocacy. Here in Virginia where I live, the local bleeding disorder chapters [Virginia Hemophilia Foundation and Hemophilia Association of the Capital Area pushed our community to contact our state legislators about the copay bill under consideration. They made this a priority during their advocacy days, and they partnered with other rare disease groups to create a LOUD and resounding voice against the copay accumulator adjuster.
This type of advocacy depends upon volume and numbers, so while you may sometimes feel adding your voice may not matter, that is just not true. This kind of thinking falls into a classical paradox known as the Sorites Paradox, or, more commonly, The Argument of the Heap. The paradox claims that 1 person removed or added to a group doesn’t matter, but the paradox is that group, the heap, really doesn’t exist: a heap is simply a term for the collection of individual parts, each independent but essential. Removing or adding an individual to that heap substantially changes it. If you’ve lost me on the philosophy there, it’s really just to say everyone matters and in advocacy, every voice matters.
Here are a few steps for taking state action:
Reach out to your local chapter and ask about any pending copay accumulator state bills. If your state doesn’t have a current bill under consideration, ask about a group or coalition that may be drafting or seeking sponsorship for a bill. You may also reach out to HFA and NHF who have policy divisions following issues at a state level. The education team here at BioMatrix is also a great resource. We have contacts in each state who follow this issue and would be happy to relay the information to you. Just email us at education@biomatrixsprx.com.
Use an online tool to find and contact your state legislators. There are several online tools for finding your representatives if you google “find my representatives” and enter your state, but HFA has a great one on their website, www.hemophiliafed.org. On their site, hover your cursor over “For Patients and Families” and click “Take Action Center.” From there, scroll down until you see “Find My Legislator.” Enter your information and the tool will show all your representatives from a national and state level. HFA even provides direct links to your representative pages where you can email them and also sign up for their office’s newsletters to keep you even more informed.
Write a short email asking to support a bill if your state has one pending. Check out our handy template at the end of this article for advice on writing this.
Write to your state representative about sponsoring a copay accumulator bill if none is pending. Unfortunately, this is where things start and would indicate your state advocacy has a bit more work to do. Don’t be disheartened if this is the case; all current laws started here, and all bills also start here. However, be sure you have reached out to your chapter or a group like HFA to find coordinated efforts that may be going on. Often on issues like this, certain state legislators will already be indicated as favorable to supporting a bill and that’s where you’d want to focus these initial energies. This may be a representative other than your own. Once a sponsor is secured, you work up the ladder to bring more representatives on board supporting the cause.
How do I become a national advocate?
Advocacy at the national or federal level is very similar to that at the state level. The key steps are essentially the same except you will now be reaching out to your Congressional House and Senate representatives. Moreover, there is already a bill in the House that needs support!
Use an online tool to find and contact your Congressional House representative via email or phone. See above for advice.
Ask your House representative to support House bill HR 7647. This bill, introduced by Rep. Donald McEachin (D-VA), Rep. Rodney David (R-IL) and Rep. Bonnie Watson Coleman (NJ-12) delays the implementation of copay accumulator adjusters for 12 months beyond the end of the COVID-19 pandemic. While the bill does not seek to terminate copay accumulator policies as many of us would like, it is a politically savvy move to try and recruit bipartisan support, for which HR 7647 congressional representatives on both sides can feel good about supporting a temporary delay related to the pandemic as opposed to a full commitment to overturning an insurance policy. As advocacy goes, it would give the community a foothold in the argument if HR 7647 were to pass.
Contact your Senate representative and let them know about HR 7647 and ask for a companion Senate bill, and/or for support for HR 7647 when it leaves the House.
Continue following up with both representatives throughout the year. Here, you must walk the balance between concerned advocate and over-zealous disruptor; in other words, you wouldn’t want to email your representatives daily, but once is not enough to show them your concern. I like to say you should be polite and courteous and follow up just to be “annoying enough,” perhaps every month or so.
Why should I participate in state and national advocacy?
For an issue like copay accumulator adjusters, it’s imperative to participate in advocacy at the state and national level as the laws you are seeking would cover accumulator policies in different plans. State laws will offer protections from accumulator policies in state-run and ACA plans, but they will not protect people enrolled in large group plans, such as those found in big companies that have employees in more than one state. National, federal law, however, will cover accumulator policies in those large group insurance plans, but, likewise, will be ineffective for state-run plans.
When should I start?
Now! Today! The right time is always right now!
What if I’m not a great writer or speaker?
This doesn’t matter. Representatives hear from hundreds of thousands of constituents just like you. Follow the ABCs here and you’ll be fine:
Tell your story about how life-saving medicines are important to you or a loved one.
Explain to your representative why copay accumulator adjusters are dangerous to you or your loved one.
Ask them to support a bill against copay accumulator adjusters.
That’s it! Your voice will be heard, and advocacy will do its job of improving our lives and our health!
Advocacy Letter Template
This template serves as an example of how to write to a legislative representative regarding HR 7647. Try to keep your letter to one page, be polite, be specific, and share your personal story.
GREETING
(Use “Dear” as it is best accepted formal greeting and use titles, which can be shorten to Rep. or Sen.)
Dear Representative ____________ or Senator ____________ :
OPENING
(Be polite and direct about why you are writing. Change to suit your needs. Keep it short and to the point - 2-3 sentences.)
I am writing to ask for your support of HR 7647. I (my child, my loved one, etc.) have (has) _________ (severity and diagnosis), which is a rare bleeding disorder. My hemophilia (or other diagnosis) is treated with (medication name), an extremely expensive medication used to control bleeding – there is no generic form of this (injectable) medicine. I rely on manufacturer copay cards to help pay for my life-saving medication, but insurance company copay accumulator policies have made my medication difficult to afford. HR 7647 addresses this issue and would allow me to receive the vital medicine I (my child) need(s).
BODY
(The body of the letter needs to include your personal story. Listed below are some tips to help provide content. Be specific and provide an example. Keep this to 2 paragraphs, 4-6 sentences each.)
Paragraph 1
How long have you had/cared for someone with hemophilia/vWD and how long have you been reliant upon life-saving medicine?
On average, how much does your medication cost per month/per year?
How much is your yearly deductible and out-of-pocket?
Explain how being able to use a copay card in the past made a difference - when you ordered, used the card, and were able to receive medication.
Explain why you may be unable to obtain this medication without the help of a copay card being applied toward meeting your out-of-pocket.
Paragraph 2
Speak about what would happen to you/your child without bleeding disorders medication.
If you have an example where medicine saved your/your child’s life or prevented serious ramifications, include it in a few sentences. This paints a human portrait for your legislative representative.
CLOSING
(Keep it short and direct. Restate the bill you would like your legislator to support and thank them.)
This is a very expensive disease whose outcome would be disabling or even fatal without life-saving medicines.
The financial burden and affordability of treatment has become increasingly difficult/impossible due to insurance companies’ copay accumulator policies.
Thank you very much for your consideration and time.
Please feel free to contact me for more of an explanation on how HR 7647 affects me. I look forward to hearing from you.
SIGNATURE
Include all of your contact information. While it’s unlikely you will be called, you just might. Include your address as it will confirm your constituency.
Sincerely,
Name
Address
Home and cell phone
Email
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