Prescription copay assistance scrutinized for role in drug prices – USA TODAY

When Beth Waldron got a letter from her health insurance provider last year that her blood thinner Eliquis would no longer be covered, she faced two options: Change to another medication that could have adverse side effects or go from paying $30 a month to more than $600 a month out of pocket.  
She didn’t know initially that the maker of Eliquis offers a copay coupon card that allows patients to get the drug for only $10 a month.  
She also didn’t know that the card, like many patient assistance programs offered by drugmakers, came with a lot of fine print. 
Patient assistance programs and manufacturer copay coupons, intended to help those who cannot afford their medications, have come under scrutiny for being a short-term solution to the much larger problem of prescription drug prices that are bleeding patients dry.
HOW DO PATIENT ASSISTANCE PROGRAMS WORK?:The pros and cons of prescription coupons and more.
“I think depending upon the drug and depending upon the assistance program, you know, some are more generous than others and patients need to fully understand the fine print,” Waldron, 53, of Chapel Hill, North Carolina, said. “But I don’t see the assistance cards as being the solution to high prescription drug prices.”
Some programs have income restrictions or only people on certain types of insurance qualify. Some, like the Eliquis coupon, have an annual cap so they don’t actually cover the drug for a full year. And increasingly, insurance plans are excluding any assistance dollars from counting toward the patient’s out-of-pocket total and deductible. 
COPAY ACCUMULATORS:Patients can’t count drug discounts toward health insurance deductible
Some are quick and easy to obtain, while others are more complicated, according to Rich Sagall, president of NeedyMeds, an organization that aggregates information on 40,000 patient assistance programs and allows people to search by drug or diagnosis.
“We have as much information as we can get on every program. So we talk about eligibility guidelines, how long it takes to get the medication, how many times you get a refill, anything we can think of,” Sagall said.
Advocates for lower drug prices ask why companies allow some patients the ability to pay $10 for a drug while charging others 60 times that when drugmakers could just make the drug cheaper across the board. 
“I think the biggest thing is the fact that patients have to jump through these hoops at all, you know, rather than just having lower drug prices or having a drug on formulary,” Waldron said.
She found she could get the coupon for Eliquis from her doctor, but she talked to other patients who didn’t know it existed until she posted it on social media. 
The card Waldron got was for 24 months, but some are for six months. Some can be renewed, but others can’t, said Waldron, who has researched these issues as an independent patient advocate for those on anticoagulants. 
“So if you like apply and get a copay card once, then that’s it. You can’t apply for a copay card and get another one in the future,” she said. “I’ve been on (a blood thinner) for 19 years. So 24 months is helpful, but that’s not gonna help me for the rest of my life.”
However, Sagall said that’s true for some copay cards, but others can be used repeatedly for several years.
CVS Caremark, with 103 million members and 68,000 national network pharmacies, added Eliquis back to its formulary in July after the pharmacy benefit manager  – the middlemen who negotiate drug prices and decide which drugs are covered on behalf of health insurance plans – said they secured a better price for the drug. 
“Anti-coagulant therapies are among the non-specialty products where we are seeing the fastest cost increases from drug manufacturers, and we will continue to push back on unwarranted price increases,” CVS Caremark said in a statement to USA TODAY.
The newest issue facing patients seeking assistance is the introduction of copay accumulator and maximizer programs which ban assistance money from counting toward deductibles and out-of-pocket maximums.
These programs are the subject of debate in statehouses across the country and a new lawsuit from patient groups seeking to ban them. 
“This practice is not only illegal but increases the cost of prescription drugs for millions of patients nationwide,” said Carl Schmid, executive director of the HIV+Hepatitis Policy Institute in a press release announcing the suit in August. “Nearly one in four Americans taking prescription drugs struggles to afford them. The growing practice of insurers and PBMs not counting copay assistance is one reason why.”
Drug manufacturers say they offer coupon programs to help patients offset the rising out-of-pocket cost of prescriptions due to health insurance plan design changes.
“Every day there are patients who show up at the pharmacy and find their commercial insurance won’t cover the cost of their medicine,” said Brian Newell, spokesman for the drugmaker trade group Pharmaceutical Research and Manufacturers of America. “To help fill these gaps in insurance coverage, biopharmaceutical companies offer coupons and other forms of patient assistance.”
Pharmacy benefit managers say drugmakers only offer coupons to entice people to take more expensive brand-name drugs. 
Three companies, OptumRX, Express Scripts and CVS Caremark, control about 80% of the drug market. They’ve all spoken out against copay assistance cards – or even stopped covering drugs with coupons available – with OptumRx posting on its website, “The presence of a copay card means patients may not have financial incentive to utilize a lower-cost preferred therapy.”
The Pharmaceutical Care Management Association, which represents pharmacy benefit managers, says copay coupons are marketing tools used by drugmakers to get more people to use high-priced drugs. 
“Drug manufacturers and drug manufacturers alone set and raise prescription drug prices,” the association said in a statement. “The fact is, drug manufacturers only use copay coupons to boost their profits by steering patients to more expensive medications when less expensive, clinically effective alternatives exist. That’s why drugmakers’ use of copay coupon tactics are banned under Medicare and other government healthcare programs.”
The USA TODAY Network has previously covered the back and forth between drug makers, pharmacy benefit managers and the health plans they represent over who is to blame for high drug prices. 
Read more about the factors at play here:
‘IT IS LEGAL EXTORTION’:Diabetics pay steep price for insulin as rebates drive up costs
REFORM:Biden urges Congress to pass reforms to lower prescription drug costs, change Medicare rule
DRUG PRICES:Seniors’ health care suffers due to skyrocketing fees for prescription drugs, pharmacists say
SUPREME COURT:States can regulate pharmacy benefit managers
Patients mostly just say they’re frustrated and confused, trying to afford their medication and navigate what programs are available to help. 
While Susan Adams, of Wiley, Texas, says patient assistance programs have been a blessing for her family, she postponed getting a new expensive biologic drug for her spondyloarthropathy because she was unclear on the income restrictions and didn’t think she’d qualify. 
“I’ve investigated that more and hope that other patients know that they can avail themselves of these programs with most levels of income,” she said. “Most of these drugs are just impossible to afford … without financial assistance.”
When these programs started, they were really mostly for uninsured people, said Robert Popovian, chief science officer of the Global Healthy Living Foundation, which advocates for patients with arthritis and other chronic illnesses.
But the need for drug copay assistance among the insured has grown as health plans have shifted more and more of the cost burden onto patients via high deductible health plans, said Kollet Koulianos, vice president of payer relations at the National Hemophilia Foundation.
“Every year these deductibles are getting higher and higher. And for patients there’s a breaking point,” she said. “Americans struggle to pay.”
The average deductible today is over $5,000, Koulianos said.
So many – more than 80% of cancer patients use copay assistance according to the American Cancer Society –   are turning to patient assistance programs, manufacturer coupons, or retail discount programs like GoodRx or Blink Health which all have pros and cons associated with their use, patient advocates say. 
Waldron said the manufacturer coupon she used was a lifesaver, allowing her to stay on her medication in the short term while researching other options for the long term.
But she learned from the manufacturer that only about 50,000 of the 150,000 patients who lost coverage for the drug this year took advantage of the coupon. 
“Patients aren’t aware that these programs exist,” Waldron said. And then there are the restrictions of the coupon programs. 
“One of the big limitations of these (coupon) programs is you have to be commercially insured,” Waldron said. “You can’t have Medicare, Medicaid, Department of Defense, Tricare, or any of the other government-sponsored insurance. So that leaves a whole lot of people ineligible for these assistance programs.”
Waldron found there were other limitations with the card including an annual price cap.
Although it brought the price down to $10 a month, it only covered up to $6,400. Since the drug costs $7,600 per year, the person using the card would have to pay full price for the last few months of the year. 
“So a $10 copay card is not really $10 every month, it’s $10 until you hit that annual maximum,” Waldron said. 
People also need to be aware of the impact of manufacturer coupons on their employer health plan, Koulianos said. 
When she went to fill a prescription for a cholesterol medication, she was asked if she wanted the generic or the brand name. The generic cost $5 while the copay for the nbrand name was $100.
She started to choose the generic, but the pharmacist said there was a manufacturer coupon that brought the brand name copay down to $5 too. 
She decided to stick with the generic because she knew her employer would bear the cost of the more expensive version if she used the coupon.
This is a scenario critics of manufacturer coupons point to as an ongoing issue, saying the discount is simply there to entice people to take the higher-priced drug over the generic. Pharmacy benefit managers say this drives up costs for everyone on the health plan. 
“When coupon programs drive increased sales of high-priced drugs, employers and insurers must pay for them. Those increased costs are passed along to members in the form of higher premiums,” PBM OptumRx says on its website. 
But PhRMA, the association that represents drugmakers, cites data showing that less than 1% of coupons are used on medications with a generic available.
A study by IQVIA, a pharmaceutical analytics and research company, found that “While copay cards are still being utilized by patients on brand scripts after (generics become available), the use is limited and only makes up 0.4% of the total commercial market volume.”
Most cases where patients are relying on these coupons are similar to Waldron’s situation, PhRMA said.
There is no generic for Eliquis and some of the alternative blood thinners that are cheaper have different side effects or require frequent blood tests, according to info from GoodRx.
Waldron said she made the decision to take Eliquis with her doctor, and health plans shouldn’t be forcing her to switch to something that could be harmful to her. 
“I had no idea that someone other than my doctor could decide which blood thinner I take. Because blood thinners are a rather dangerous class of medication,” she said.
Like the copay coupons, patient assistance programs offered by nonprofits and foundations run by drugmakers each have their own set of qualification standards which typically include income maximums and some sort of proof that you don’t have insurance or that your insurance doesn’t cover your medication. 
Finding these programs is more difficult than the copay coupons which are generally offered at doctors’ offices and pharmacies. To find a patient assistance program, people typically have to go searching online on manufacturer websites or on a site like NeedyMeds. 
“Finding it is hard. But getting into it is not that difficult, because a lot of pharma companies have very liberal rules and regulations about what they allow. When these companies started this, it was very strict, you had to have no insurance. Now, it’s like everybody qualifies,” Popovian said. 
Throwing a new wrench in the patient assistance landscape, insurers began in 2017 to implement rules which say that any assistance money you receive no longer counts toward your deductible or out-of-pocket totals.
Koulianos said hitting a month where the assistance has run out and you owe the full deductible in order to get meds can be disastrous for patients on specialty drugs. 
She worked with a hematology patient who couldn’t afford the $6,250 for one month of meds after his assistance was exhausted. It took more than a month of calling and negotiating with the pharmacy benefit manager and insurance plan to get them to agree to waive his cost. By that time he’d had an uncontrolled bleed and became hospitalized. 
He ended up going from a patient who cost his health plan less than $80,000 over two years to one who cost his plan $3.5 million. 
“So putting an obstacle in the way of somebody who has no other option is going to have unintended consequences. And most employers especially, they don’t understand that they’re not seeing the whole picture. They’re applying these rules as a one size fits all option, and not really thinking about the downstream consequences,” Koulianos said. 
Follow Katie Wedell on Twitter: @KatieWedell and Facebook: facebook.com/ByKatieWedell

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