Insurance reform

Co-Pay Caveats

The Texas Bleeding Disorders Coalition announced recently with pride that HB 999 passed unanimously, 31-0, out of the 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 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 the second of a two-part article by Paul Clement to learn why.

Insurance Company Efforts to Thwart Patient Assistance Programs Part 2

By Paul Clement

Copay Maximizeris also known as variable copay program.  Maximizer programs are a recent development in insurance, and are similar to Accumulator Adjuster Plans (AAP) in that they do not count the manufacturer’s copay assistance payments toward the patient’s deductible or out-of-pocket (OOP) maximum. They differ in that the maximum value of the manufacturer’s card is divided by twelve and applied evenly throughout the benefit year and there are no OOP costs for factor. Plan members are not hit with a “copay surprise” (see last week’s blog) with a maximizer program, but they are still on the hook for paying their annual deductible and coinsurance on all other drugs and services until they reach their OOP maximum for the year. And like AAPs, copay maximizer programs often use deceptive language in descriptions of the program, as insurance companies deliberately attempt to mislead plan members by claiming they are a benefit.

To implement an AAP or copay maximizer, the health plan requires a member to enroll in a separate AAP or copay maximizer program. The plan then deems certain specialty drugs, such as factor, to be “non-essential health benefits.” Non-essential drugs are still covered by the plan, but they are not subject to the Affordable Care Act (ACA) Essential Health Benefit requirements and can be removed from the OOP maximums required by the ACA, which in turn, enables the health plan to completely deplete all of the patient assistance funds!

Depleting all of the plan member’s assistance funds puts the sustainability of the patient assistance programs at risk. Although maximizer programs avoid the AAP copay surprise, they negate the intended benefit of patient assistance programs—and remove a safety net for patients who need expensive drugs like factor but cannot afford them.

What if you, a plan member, do not want to sign up for an AAP or maximizer program? Many plans make their AAP or maximizer program a “benefit” you can’t refuse. If you do not enroll, you are subject to a higher coinsurance, sometimes as much as 50%, and because the plan has deemed factor a non-essential health benefit, the coinsurance, along with your deductible, does not count towards the annual OOP maximum. This would potentially expose you to OOP costs exceeding $100,000 or more a year—not signing up is obviously not an option if you need factor. And even though this tactic would result in you paying many times more than the permissible annual OOP limits under the ACA, insurance companies are claiming the practice is legal. Their position is sure to be tested in the courts in coming years.

Both AAPs and maximizers reduce the health plan’s cost by shifting drug costs to manufacturers and plan members. High costs for drugs often lead to poorer health outcomes as a result of members avoiding use of the specialty drug—and this increases the risk of complications (like joint damage for people with hemophilia), potentially resulting in higher costs to the health care system.

And there’s one more threat to co-pay assistance.

Alternative Funding Companies (AFCs) are also known as patient advocacy programs or specialty carve-out programs. These companies include some pharmacy benefit managers (PBMs) and several third-party vendors which offer their services to health plan sponsors, such as employers that fund their own health coverage, promising to lower their drug costs. If an employer signs on, the AFC eliminates or “carves out” specialty drugs, like factor, from the health plan’s formulary and deems them “non-essential health benefits” to bypass ACA laws and regulations, including limits on OOP costs. Usually, the health plan member does not know this has happened until they place an order for their specialty drug and received a denial for the prescription or are charged a high coinsurance because the drug is now “non-essential.”

      At this point, the AFC steps in and offers to “rescue” the plan member (from a problem the AFC itself created)—you‚— by providing them the specialty drug at little or no cost. They then collect detailed personal information from you and, using a database of copay assistance programs, enroll you in multiple assistance programs, both pharmaceutical and private patient assistance programs (which is not insurance), to help cover the cost of the drug. AFC vendors also usually require you to sign a patient authorization form certifying that you are not enrolled in a health care program that pays for any portion of your prescription drug costs, in order to qualify you for some types of patient assistance (a certification which is usually patently false). When the funding runs out or if you are denied assistance, the drug is then usually covered by the plan using a “formulary exception process.” This means you must petition the insurer to cover the drug once again. And like maximizers, the “offer” to enroll with the vendor is not one you can refuse: those that do refuse are hit with exorbitant coinsurance rates they cannot afford.

Alternative funding companies are widely viewed by patient advocacy organizations as unethical because they deplete funds that have been allocated for people who truly need them. They flout the intent of patient assistance programs, which were created to help patients who genuinely cannot afford the cost of care—not to save money for plan sponsors. In addition, the process of removing drugs from the formulary, denying prescriptions, collecting personal data, enrolling patients in assistance programs, arranging for delivery of specialty drugs and then, later, returning them to the plan, all involve delays in which patients cannot access their therapy—delays which can pose a threat to patient health and even their life. These companies also impact the sustainability of vital patient assistance programs, with some companies responding by reducing the amount of assistance they provide or eliminating their patient assistance programs altogether.

Like AAPs and maximizers, alternative funding vendors are not transparent: they use duplicitous, deceptive language, describing their programs as a “benefit” and “advocacy services”—and they deceive both employers sponsoring health plans as well as plan members. (Many employers do not realize what they are signing up for.)

If you suspect you are being asked to sign up for one of these programs, contact your local hemophilia organization, or the NHF or HFA for assistance. And if you have a commercial health insurance plan and are experiencing a disruption in services or exorbitant coinsurance, including your factor being labeled as “non-essential,” contact your employer and let them know what is happening and how it is affecting your life—they may not realize how their health plan choices affect you.

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.”

Welcome to the Jungle, I mean Marketplace! Part 2

At NHF’s Social Worker Insurance Workshop in Baltimore on January 16, there were some great questions asked from the audience concerning the Marketplace. Social workers know they will most likely be the first line of defense for patients with bleeding disorders facing the many challenges of the ACA. Here are some questions asked and other snippets of information from the workshop.
Q. What if you don’t like the insurance plan options in the Marketplace. How do you file a
special appeal [concerning coverage]?

Go to; there is a link for an appeal. Appeals are
worthwhile because sometimes codes are entered in wrong, and sometimes people
get approved for procedures and benefits that were originally denied.
Is there a limit to the number of appeals?
Q: But after you pick a plan and don’t like it, what if you just don’t pay the next month’s
premium? Won’t you just get canceled and then you can choose another plan? Isn’t
that easier than an appeal?
There is an open enrollment time, so you can’t choose to switch outside that time period. After March 31 you can’t get into a “QHP” (an insurance plan that is certified by the Health
Insurance Marketplace, provides essential health benefits, follows established
limits on cost-sharing (like deductibles, copayments, and out-of-pocket maximum
amounts), and meets other requirements.)

Mike Bradley (Baxter), Laurie Kelly, and Derek Robertson (Apogenics, Inc.)

Joanna Gray, of CRD Associates told us that the ACA says HTCs must be included in-network. But… plans don’t have to include any specific medical procedure. They only need to cover “sufficient” providers, and they don’t say who those providers are. The ACA hasn’t come through in its promise. NHF says be careful! Don’t pick a plan that doesn’t include your HTC or product, because now it’s legal for providers to avoid HTCs. We can’t change the policy for this year. Maybe next? We need to complain to get changes made.
NICOLE of NHF said that every state has its own definition of EHB (essential health benefits). So picking a plan is harder, because there are more plans, and picking one that covers what you need is hard.
Q: To use the Marketplace, you must be a legal resident.  What happens to legal immigrants,
who are not citizens?
   In Nevada, they are currently covered under high-risk pools but will lose this soon (the pools are closing). Are there alternatives?
No. You can still get emergency medical through Medicaid; and of course, anyone can buy insurance in the commercial marketplace.

Nancy Hatcher and Ed Kuebler

JoAnn Volk of The Center on Health Insurance Reform, Georgetown University Health Policy Institute, said that six states will not enforce the ACA: Alabama, Missouri, Oklahoma, Texas, and Wyoming. The ACA gives primary responsibility to states to enforce the rules, but there are 10 state benchmarks (Essential Health Benefits) that must be followed, and will be reviewed by the feds.
If you find a QHB but it doesn’t include factor, JoAnn thinks that the appeals process will work, recommending that people get their drugs for 20 days, during the appeals process, even if they are not on formulary.
Q: How do I find the benchmark plan for my state?
All benchmarks are listed in the state insurance department website.  (for example)
Q: What’s the advantage of going into the Marketplace?
The advantage of going into the Marketplace is subsidies; you can be eligible for discounts within limits. To buy into a Marketplace, you have to be physically in the state, not incarcerated and be legally present. There are no other limits.
Q: When we couldn’t find what we were looking for (was our hematologist covered), and we called the website, we couldn’t get any help.
Don’t call the website. Call the plan provider. Sometimes it’s best to work with your HTC contracting department!  They will know who is in network.
And there is so much more information! Be sure to keep reading your HemAware (from NHF), Pulse (from us), and tap into your chapter’s or your local hemophilia organization’s efforts to educate their families about insurance changes. Lots happening; don’t miss deadlines and opportunities by not staying on top!
Great Book I Just Read (Again)
Ada Blackjack: A True Story of Survival in the Arctic  by
Jennifer Niven [Kindle]
A secret exploration to Wrangle Island, in
the Behring Sea, in September 1921 goes terribly wrong when food runs low and
sea ice keeps a relief ship from rescuing the stranded four young men and one 25-year-old
Eskimo woman trapped there. The trip sets off an international crisis when
Russia, Great Britain and the US learn that the trips leader, the opportunist and
greedy explorer Vilhalmur Stefansson, who never even went, was trying to claim
the island for Canada. Only Ada survives the horrible conditions, and her
return sets off a media firestorm. Did she kill her companions? How did she survive?
Diaries are stolen, Ada is hounded and used by the press and her own sponsors.
She becomes at once a hero and a villain. Fantastic read and Ada will amaze you
with her spirit and ingenuity. Her real survival started when she returned home.
Four/five stars

Insurance Buyer Beware!

While catching up on some insurance reading, I came across this article, which gives some food for thought. I’ve been giving insurance symposia around the country, and we have been focusing this year on the “Marketplace” websites, but this never even crossed my mind!

“Buyer Beware: Obamacare creates an opening for confusion and scams”

Kate Pickert
Government Bureaucrats aren’t the only ones preparing for a key component of President Obama’s signature health care law that goes into effect this fall.
Health care exchanges, the marketplaces where people can buy soon-to-be required insurance, launch Oct. 1, and experts warn that their debut
could create a prime moneymaking opportunity for illegal scammers and others looking to capitalize on consumer confusion. “There are people licking their chops and saying, ‘A sucker is born every minuet,’” says Elizabeth Abbott of the consumer group Health Access California.
There are two main types of potential snares for consumers: outright cons and insurance-like plans that give the impression of offering
more coverage than they actually provide. Regulatory agencies are already on high alert for fraud. Both the Federal Trade Commission and the Better Business Bureau have posted warnings about Obamacare-related identity theft. And in Pennsylvania, one enterprising insurance broker set up a website with the official state seal and the title Pennsylvania Health Exchange. The site was removed after a warning for the state insurance department.
Some quasi-insurance products expected to proliferate come October are ‘discount medical plans,” which promise lower health care costs in exchange for a recurring fee. Many of these plans lure customers with language that implies comprehensive coverage, but the reality is far more limited.
“The problem is, people pay the money, buy a plan, and when they get sick, they find out they don’t’ have the financial security they thought they had,” says Minnesota attorney general Lori Swanson, who has sued several discount medial plans for deceptive market practices. Consumer watchdogs are also wary of plans that reimburse consumers with set amounts for doctor visits or hospital stays, regardless of the actual costs.
Obamacare bans some forms of skimpy coverage, but with enforcement left to the states—some of which are less than enthusiastic about
the law—don’t count on those misleading plans disappearing overnight. “Will the states crack down on them?” asks Timothy Jost, a law professor at Washington and Lee University and an expert on insurance regulation. “Well, a number of states
aren’t enforcing the Affordable Care Act at all.”
Time August 19, 2013Great Book I Just Read
Into the Abyss: An Extraordinary True Story [Kindle]
Carol Shaben

A small commuter plane goes down on a subzero night in 1984 in Canada; only four of nine people survive: the 24 year old pilot, the first Muslim politician in North America, a policeman and his handcuffed prisoner. The next 36 hours reveals each man’s character, impacts them for life, and bonds them to one another for life. The prisoner saves the lives of the other three and becomes a national hero. This amazing story, expertly told, delves deep into the minds and hearts of each man before and during the accident, and follows them 20 years later to see what has become of them. The incident helped to change Canadian aviation. The author is the daughter of the politician, one of the survivors. Five/five stars.

Supreme Court Upholds ACA

It’s fair to say we’ve all been holding our breath to see what the Supreme Court would rule this past week on the Affordable Care Act, often referred to as “Obamacare.” The ruling will have a long-term effect on the bleeding disorder community. Indeed, I’ve been to Hawaii, North Carolina and Tennessee as part of our insurance symposia Pulse on the Road to ask families and patients to pay careful attention to their healthcare policies, and to what’s happening in Washington DC. Would lifetime caps be reinstalled? Would pre-existing conditions be allowed again? Our children with hemophilia would face terrible battles for healthcare access if these provisions were reinstalled.
But in a 5-4 vote, the US Supreme Court ruled to uphold most of the health care law. One central controversy was over mandatory insurance; many Americans saw this as unconstitutional and a threat to our freedom to choose our own protection and access to care. Chief Justice John Roberts gave an opinion, which upheld the constitutionality of the individual mandate because it is a tax. The Medicaid expansion has been limited.

We’re lucky to have such a vigilant community that jumped at the news and shared right away; our vigilance was earned the hard way, through massive loss of life. From the Hemophilia Federation of America:  “HFA is reviewing the ruling and will closely monitor its impact and are committed to ensuring adequate access to care for all people with bleeding disorders,” said Kimberly Haugstad, Executive Director of HFA. “We will continue our advocacy to protect beneficial provisions of the ACA, so that the overall health care system is improved.  We encourage everyone in the community to join us.”

ACA was made into law March 2010, in the hopes of reforming our convoluted and expensive healthcare system, to try to lower costs and to keep all Americans insured. About 45 million Americans (out of an estimated 300 million) do not have insurance. In fact one young man, age 27, called me two weeks ago with a severe bleed, telling me he didn’t have insurance! He wanted me to send factor that I normally give to patients in developing countries! His only resort would be to go to the ER, get factor, incur massive bills and pay the rest of his life, even just $10 a month, for this enormous cost, easily a $20-30,000 visit. The hospital would eventually write off his treatment as bad debt.

With mandatory insurance, this young man will be forced to find insurance, and his healthcare should be covered. There are so many provisions in the ACA that benefit patients with bleeding disorders, indeed anyone with chronic health disorders. But the stage is set for November: how will this ruling impact the presidential elections?

Maybe it will inspire more Americans to get out and vote. It’s only by persistent advocacy that we have even come this far. I don’t know what the future will bring, but I am breathing a little easier tonight knowing my son is covered for one more year, even while wondering what financial impact this will have on us all long term.

For more information, visit or call 1-800-230-9797.

Thanks to Tom Bennett, Executive Director, Hemophilia of North Carolina for sharing the HFA alert with us.

HemaBlog Archives