The Copay Surprise

The Texas Bleeding Disorders Coalition recently announced—with pride— that HB 999 passed unanimously, 31-0, in their Senate. This bill will eliminate copay accumulator adjuster programs on state health plans in Texas. Patients with many chronic conditions and no generic options will no longer be penalized by CAAPS and will have access to their life saving medication. This is the result of the hard work of so many over the last two legislative sessions.

What are accumulators, and why are they so important to those with bleeding disorders? Read a two-part article by Paul Clement to learn more.

Insurance Company Efforts to Thwart
Patient Assistance Programs

By Paul Clement

Hemophilia therapies—both factor and emicizumab—are extraordinarily expensive, potentially costing several hundred thousand dollars per year. Families must pay monthly premiums to buy health insurance coverage. They also must budget for the plan’s deductible (the amount you must pay before the plan starts covering some of your health care costs). And they must pay coinsurance on factor purchases (the percentage of the cost you must pay out-of-pocket [OOP], which may vary from 10% to 40%). These expenses must be paid until families reach their out-of-pocket maximum for the year, after which the plan picks up all costs.2 For a family with a child with severe hemophilia, this means budgeting for as much as $18,000 out-of-pocket, often within the first three months of the year. Few families can afford this expense.

To help meet these OOP expenses, factor manufacturers offer financial assistance to patients using their product, with annual assistance limits varying between $12,000 and $20,000, depending on the company and the product. Assistance is typically offered in the form of a card, often referred to as a “copay card”, “copay coupon card” or “savings card.” The card is presented at the time of service—such as to the pharmacist when picking up factor. The pharmacist will process the prescription using your insurance information as the primary payer and the copay card information as the secondary payer.1

Patient assistance programs are a godsend for families trying to make ends meet. So what’s the problem?

Insurers view these programs negatively, as a marketing tool for pharmaceutical companies to entice consumers to select more expensive brand-name drugs instead of lower-cost generic versions. This viewpoint may be valid for some drugs, but it doesn’t apply to factor or emicizumab, because there are no lower-cost generic forms of either type of drug. Insurance companies selling commercial insurance may also offer employers “cost savings” programs which thwart the use of patient assistance programs. And employers may opt to implement these programs, not realizing that, while saving money, they are also throwing some of their employees into financial ruin.

There are two insurance programs which target patient assistance:

Accumulator Adjuster Programs (AAP): The AAP are also known as copay accumulator programs. These insurance plan programs do not count a pharmaceutical manufacturer’s copay assistance payments towards the patient’s deductible or OOP maximum. The manufacturer copay card pays for prescriptions until the maximum value on the card is reached. Once it’s reached, your OOP costs begin counting toward your annual deductible and OOP maximum.

In a normal scenario involving copay assistance and no AAP in place, you would use the copay card to pay down your deductible and pay the coinsurance on your factor, both of which normally count toward the annual OOP maximum. Ideally, by the time the copay card is used up, you will have reached your OOP maximum, or be very close to it, and the insurance company will then pick up all costs for the year.

With an AAP in place, you would initially not see anything amiss, and the copay card would appear to be working as usual, and you would have no OOP costs for the first few factor shipments.

But then, usually around the third or fourth factor shipment, the copay card is used up and you are unexpectedly hit with the “copay surprise”—a bill for several thousand dollars. Only then do you  learns that your deductible and coinsurance have not been paid down by the copay card and you are now on the hook for several thousand dollars in costs each month until you reach your out-of-pocket maximum for the year.

Many hemophilia patients report not knowing their insurance plan implemented an AAP until they experienced the copay surprise. That’s because most health care plans are not up front about implementing an AAP and often use deceptive language, describing the AAP as a “benefit,” when, in fact, it is just the opposite.3

Thanks to advocacy efforts by nonprofit foundations like the NHF and HFA, sixteen states have banned AAPs, and a few other states have similar legislation in the works. Because of pushback on AAPs, insurance companies over the last few years have been switching to a different type of program to limit copay assistance, called a copay maximizer.

Next week: Copay maximizers, and more

  1. Some programs have restrictions, such as income limits, on who may qualify for their program. Assistance in meeting OOP expenses may also be covered by private organizations.
  2. Some plans, usually HMO plans, may have no deductible or coinsurance. Most commercial health insurance plans have both an annual deductible and coinsurance.
  3. BlueCross BlueShield of Texas calls it “Coupons for Individual Plan Members Only. ”CVS Caremark calls it “True Accumulation.” Express Scripts calls it “Out of Pocket Protection.” United Healthcare calls this “Coupon Adjustment: Benefit Plan Protection.”

Pittsburgh: Pulse on the Road

A gloriously sunny day greeted us in Pittsburgh for our fourth Pulse on the Road in 2013, on Saturday, June 15. Greeted by Alison Yazer, executive director for the Western Pennsylvania Chapter of NHF, about 18 families attended the event. Speakers Michelle Rice, public policy director of NHF, and Ruthlyn Noel, senior reimbursement specialist at Baxter Healthcare Corporation, were on hand to share their knowledge of current health care reform.

Pennsylvania has had a lot of activity regarding the Affordable Care Act, and the audience was itching to ask questions. Ruthlyn presented a one hour talk on the ACA; I followed with a short presentation on the importance of choosing a healthcare plan; Michelle then presented her highly regarded workshop, in which participants actually compare plans and crunch numbers and in the end, tell us which plan is best for their budget!

The audience peppered the speakers will excellent questions; this could be one of our liveliest audiences yet! I think there was a lot of deep concern about the ability of the government to take over aspects of our health care. Some of the highlights of the Q&A:

• The Federal government will run the Marketplace for individuals, not the state of PA
(The Marketplace, formerly known as exchanges, is a web-based program that allows people to
compare many different healthcare plans based on benefits and costs to assess the best one for each person)

Laurie Kelley and Alison Yazer

• If you make $25,000 a year, subsidies will be almost 100%
• You don’t have to be uninsured to take advantage of the Marketplace

• If you work for a large employer, you can’t drop your plan and go to the Marketplace; if you do, you won’t get any subsidies
• Insurance companies know who you are! Don’t ignore your insurance issues just because you don’t want them to know you have a bleeding disorder. Believe us, they know! They know your product, whether you have an inhibitor, your severity level.
• Without the Marketplace, you could waste hours trying to compare plans (Aetna has over 200 plans, for example!
• Coverage is not the same year to year, even with the same insurance carrier. Read you policy book annually!
• We often look at cost only of a plan, but also look at what you get for the cost, the benefits
• Sometimes factor covered under Pharmacy benefits looks more affordable, but more and more we are seeing specialty tiers… instead of a flat rate copay (like $50), you could instead pay a percentage of your drug, like 10%. 10% of factor is unaffordable!
• NHF is supporting a bill in Congress to do away with specialty tiers.

Go NHF! Thanks to everyone who attended our event!! And thanks to Baxter for sponsoring the entire event, and to the Western Penn Chapter for hosting this.

Laurie Kelley with Delores J, and children

Pulse on the Road in Alabama!

We just wrapped up a great weekend in Montgomery, Alabama, after a terrible week in Boston. I was lucky to have no problems at the airport, given the tight security, and arrived in sunny Montgomery Friday afternoon. I was greeted by a wonderful display at the Renaissance Hotel: streamers of green and purple, big Mardi Gras-style mask, and the warm hospitality of the Hemophilia and Bleeding Disorders of Alabama staff. The theme: Unveiled… Our Future Revealed, a theme the HBDA will use all year long as they raise public awareness of this rare and mysterious thing called hemophilia.

Michelle Rice and Laurie Kelley

And I was surprised by a lovely and patriotic display of fireworks right outside my hotel window that night!
On Saturday morning, while the kids were organized to be bussed to the local zoo, we adults visited another kind of zoo—the world of health care reform! Our session kicked off with a full audience of about 100 people with hemophilia and their families. “Pulse on the Road” is a three-hour insurance symposium that
brings our newsletter Pulse to life.
This year we will visit six states; we’ve already been to New York for Albany Days and Colorado for the annual meeting.
Our guest speakers were Michelle Rice, public policy director at NHF, of course, and Marvin Poole, a senior reimbursement manage with Baxter Healthcare, sponsor
of this symposium.

Laurie Kelley with Vicky Jackson

Marvin opened with a review of the Affordable Care Act (ACA) which led to an explosion of questions. The audience, attentive and curious, was hungry was answers. I jotted down questions as they came:

Will your employer be able to deny you due to hemophilia?
a.     Marvin replied no. Under the ACA, no pre-existing condition exclusions are allowed.
This is one of the beauties of the legislation!
Will the “navigators” (the helpers who will guide us using the new exchanges, now called marketplace, websites where we can buy insurance) be neutral? Or will they work with the payers? Whose side
are they on?
a.     Michelle noted that they are not on
anyone’s side. They are trained to be neutral, and are there to help us
evaluate the cost versus the benefits of any given plan, to help us decide
which is best for us.
What are the essential health benefits?
a.     Michelle noted that certain packages called essential health benefits (EHB) must be included in all insurance plans. These are basic services that must be covered. But… the definition of what these things are may differ! For
example, ER coverage when there is an emergency. What’s the definition of an
emergency? For Michelle it might be an ear infection as she travels a lot. But for a payer, it might be loss of life or limb!
Are payers going to cap insurance for premiums? I’m paying $900 a month!
a.     Marvin answered that there will be a cap on copays, but premiums will be expected to rise.
Explain what the marketplace is.
a.     Michelle replied that these are web portals (websites) created by the states that allow people to “shop” on line
for insurance plans. You can plug in your requirements and needs, and the system will bring up various plans for you to compare. These plans will be denoted by a cost-sharing scheme: Bronze, Silver, Gold, and Platinum. You can choose one of these plans based on how much you are willing to pay. For example, a Bronze plan might be 60/40; you pay 40%, with lower monthly premiums. A Platinum might be 90/10, with high premiums but lower out of pocket costs after that.
But Michelle noted that the maximum out-of-pocket (OOP) costs to us, consumers, for health insurance through the marketplace
regardless of the plan are $6,200 for an individual and $12,000 for a family. What counts toward it? Copays, coinsurance, deductibles related to EHB.
What about tiers? If you have a Platinum with 90/10 cost sharing, even 10% of the cost of factor is outrageous.
a.     Michelle replied that our understanding is that your OOP, even with tiers, goes toward that OOP max in the marketplace.
If you have private insurance, can you still use the marketplace?
a.     Not if you have a large employer. As of now, no.
What about Medicaid? What changes will happen there?
   Brian Ward, president of the HBDA said Alabama is not currently managed Medicaid, but might be soon.  Managed Medicaid is when it is managed by a payer like Blue Cross Blue Shield (BCBS) or Aetna, for example. It may have a PDL or formulary which lists the drugs covered by your plan (know this one, for factor!). Michelle said it is very much like a Medicaid HMO: it uses a Primary Care Physician (PCP), and in network hospitals and physicians. Coverage will be the same for services but the networks will be different.

With friend Kelly Champagne

Can payers reject prophy on Medicaid managed care?
a.     Michelle: NHF hasn’t seen formularies yet r restricted prophy. They will restrict factor provider (meaning specialty
pharmacy). They seem to “get” prophy for kids, not so much for adults and may argue that coverage.
b.     Michelle also replied that most changes in Medicaid are not related to ACA. Managed care has been with us for years, and now Medicaid is trying to use it for more groups like hemophilia. Sometimes managed care is better for us all, but the biggest problem for us all is coverage for factor.
One mom lamented, “My son uses $30,000 a month and he’s only 2 year old. I can’t have caps!” Brian then stressed: tell us your stories, your struggles, because we will then tell Michelle at NHF and NHF will can set policy.
After this lively session, I then spoke for 20 minutes about the importance of being able to choose your health care plan, followed by Michelle Rice’s excellent hands-on seminar about NHF’s toolkit, which has attendees crunch through numbers
to calculate the different between two plans for “John Doe,” who must choose between two plans. Wow, the numbers were flying, and attendees quickly calculated the costs. This is a great exercise for families who feel intimidated by insurance policies and questioning charges.

Laurie with Tricia, a mom with a child with hemophilia

It was an engaging, excellent three hours, filled with inquisitive audience members (every speaker’s dream!), and much information sharing. It is a lot to absorb but family members came away with new tools, new ideas and more solidarity.
Thanks to the Hemophilia and Bleeding Disorders of Alabama for inviting us, to Vicky Jackson, executive director extraordinaire and her team, and Brian Ward, president. And to Baxter Healthcare for sponsoring Pulse on the Road and to all the companies who supported this wonderful weekend!
For more information on insurance, download Pulse on the Road for free at
Great Book I Just Read
by Frank McCourt
 Poignant, page-turning and superbly written story, based on the author’s life, of growing up impoverished in Ireland during World War II. If you’re Irish, you will especially love the historical references, phrases and cultural mind-sets, things we all heard growing up. But mostly this is a book about how a child thinks and perceives his world when he is trying to survive harsh poverty, hunger, loss of siblings, alcoholism, an absentee father and the brutal reception he receives from most adults, including those of the Catholic church. Five/five stars.

Pulse on the Road in Colorado!

The Colorado Chapter of the National Hemophilia Foundation is flourishing under the leadership of Amy Board, executive director and her team. We had an excellent turnout for our Pulse on the Road insurance symposium yesterday, presented at the Colorado Chapter’s Educational Dayz! 2013.

Friday night started with a fun ice-breaker, dinner and then a great presentation in joint care by my friend Jeff Kallberg, a physical therapist who has hemophilia. This was followed by a carnival in the ballroom. There were lots of children and their families attending, so the whole event was kid-friendly, of course!

On Saturday, I was joined by Michelle Rice, policy director of NHF and Frank Quintieri of Baxter Healthcare to present Pulse on the Road. Frank gave an overview of the Affordable Care Act (ACA). In a quick review he stated that the ACA, passed in 2010:

  • Lifts lifetime & annual caps
  • Dependents stay on parents’ plan till age 26
  • Eliminates pre-existing condition exclusions
  • Creates “marketplaces”
  • Allows states to expand Medicaid eligibility

Frank explained each of these changes in detail, all of which was good news for people with chronic disorders. The audience had excellent questions in response to his talk, from how does the ACA affect the self-insured plans, to what happens when a child with hemophilia turns 26 and then doesn’t have insurance. We all agreed that this was one of our most inquisitive audiences to date!

I spoke after a break about the importance of choosing a healthcare plan: you need to know terms used by payers, where factor is charged on your plan (major medical or pharmacy?), and what are the costs versus the benefits of the plan? Beware of what is covered in–network versus out-of-network. And most of all, know when your open enrollment period is—the time when your employer chooses a new plan. We all had a great laugh when audience member Maryann called it open season; “Like deer hunting?” I replied.

Michelle Rice presented NHF’s excellent Insurance Toolkit, designed to walk you through a hypothetical patient who wants to compare two plans. It’s detailed, challenging and incredibly useful. If you can do this Toolkit, you are ready to compare plans under the ACA through the marketplaces. The audience dug right in and got to work, using the calculators we supplied. And right away people caught on that there was a trick question when it came to plugging factor costs in! Impressive!
In summary, we reiterated that:

  • Everyone must have health care coverage in 2014
  • You may need to select your coverage in a marketplace
  • You must read your insurance policy annually

Hats off to Amy and her team for an excellent weekend, and for being such gracious hosts for us. We’re excited to see Colorado flourishing!

No book review this time. Colorado patient Chris Bombardier, who summited Mt. Aconcagua in Argentina in February (first person with hemophilia ever to do this!) and girlfriend Jessica Carter kindly spent the day with me Sunday to take me hiking and caving. The original plan was to hike 14,000 ft Pike’s Peak but conditions were very bad—high winds and lots of snow. But we had a great day hiking the Gardens of the Gods, and later visiting the Cave of the Winds. Beautiful rock formations under ground, a mile of stunning beauty including stalactites, stalagmites, columns, cave popcorn, cave bacon and soda straws. Colorado has tremendous natural beauty: go see it if you can!

The Power of the Common Person: NHF’s Washington Days

Laurie Kelley with Debbi Adamkin,  executive director of Florida chapter

Don’t be nervous!

Ellen Riker told the attentive audience of first-timers at NHF’s Washington
Days on Wednesday, February 27. I was thrilled to be among the first-timers.
And I took a lot of heat for that. For all I have traveled the world, and been
involved with our community for about 24 years, I have never attended
Washington Days! I’m usually in a developing country, as winter provides mild
temperatures overseas. But now, I’m hooked on Washington Days and can guarantee I’ll be back.

Washington Days originally began by HTCs in the 1970s, to
secure more funding. Many of their services were not billable to insurance,
like those for social services and physical therapy. Soon, National Hemophilia
Foundation (NHF) and the HTCs joined forces to help advocate for the HTC
comprehensive care model and in 1975, successfully secured funding. Now, groups of patients and families with hemophilia come from all states to meet with
their representative and senators to speak with one voice about securing funding and preserving care. This year? The largest turnout yet with over 340 people ready to lobby, from nine-year-old Peyton Brush of Texas, who has hemophilia, to, well, people in my age group!

The next speaker, Joanna Gray, told us “You’ll never be
alone when you lobby.” I originally thought we had to meet with our reps solo! But we would go as a regional or state group. “And meeting with the staff is more important than meeting with a senator.” I looked at my agenda and we would have seven meetings in seven hours on Capitol Hill!

The next speaker Wednesday night was Travis Albright, an
articulate young man from Michigan who serves as an aide for representative Gary Peters. He advised, “Lobbying can be intimidating, but you are the most important person there. You have a story to tell. I would prepare facts and figures when I would lobby, but the [hemophilia] camp stories I told made the biggest impression. Every representative in the House represents 600,000 people. You represent your community, which is small. You have awesome power to speak for everyone.”

And Michelle Rice, director of public policy at NHF, stunned
us by saying “We have 220 visits scheduled for tomorrow!”

I have met with Prime Ministers, Health Ministers and even many celebrities. No problem. But I have never once met with my representatives
or senators, and I was feeling nervous! All the speakers put me at ease, and it helped to know I was going with my local group, New England Hemophilia Association (NEHA), an experienced lobby group.
That night we gathered in the Marriott lobby bar to greet old friends, meet new ones, laugh and get ready for the big day.

Laurie Kelley with Jose de la Riva, chair of NHF, father of son with hemophilia

On Thursday the weather was sunny and brisk. You can do a lot of running around on Capitol Hill trying to meet with your representatives. We rehearsed how we would all present our two main concerns: Kevin Sorge, executive director of NEHA, would introduce us and outline why we were here: 1) To maintain the $4.9 million level of funding for HTCs from HRSA, and 2) to request co-sponsorship of H.R. 460, the Patient Access to Treatments Act, and more superficially, to keep hemophilia drugs from becoming tier 4 reimbursable. As tier 4 drugs, the co-pays would be outrageously high, with patients required to pay 25-33% of total costs, truly unaffordable for anyone. This could lead to abandoning prophylaxis and not allowing out children to do sports or travel.

NEHA meeting with Jim Gordon of rep. Stephen Lynch

Then I would give a quick rundown on Hemophilia 101. Showing
my photos of children overseas with swollen joints or head bleeds really drove
home how treacherous hemophilia can be. Then, Greg Price, who has hemophilia, would discuss HTCs, and share his own personal perspective on them. Diane Lima, mother of Jonathan and Andy, would share her experiences with insurance costs and the boys’ quality of life. She created very effective laminated cards on each boy that were teaching tools for the high cost of care. She left behind copies for each representative. Ian Muir, another person with hemophilia, also shared his  personal story. Finally Kim DeAngelis, Ph.D., board member, summarized beautifully the main points and what we needed from the representative. It all went like clockwork!

We had excellent meetings. We noted that some of the representatives’
aides were more observant, some were extremely engaged, some chatted about their
own experiences in healthcare system, but all expressed an interest in supporting
our causes. We can’t say definitely, but I think we scored a couple of co-sponsorships
for H.R. 460! I was deeply impressed by the mostly young aides: how
intelligent, poised and responsive they all were.

Laurie Kelley with NHF CEO Val Bias

It was an intense and long day. Lunch in the Capitol was
hectic, crowded and noisy. Decorated generals huddled in talks next to chatty
tables of young people. Our feet were tired and eyesight blurry by the time we were done. We had a wonderful dinner, more speakers and then back to the bar to
complete evaluations and follow up items. Thank you emails or notes are vital.
I would be sending out copies of my book Raising a Child With Hemophilia to
each person we visited.

I cannot praise NHF enough for their fantastic organization
of this event. It went without a hitch, and everyone worked hard and yet had a
great time. I’m hooked. I’ll be back next year. And I’ll be watching the
political fallout of the budget deficit management much more carefully, now
that I’ve dipped my toe into the political waters of hemophilia reimbursement.

NEHA meetings Joe Kennedy III

To see all the photos, go to

Great job NHF!

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