Illustration of tug of war between advocates and people in suits

Your Advocacy Efforts Count

A report from the bleeding disorders policy front lines
Author: Beth Howard

When Cristelee and John Peake took their son, Seth, to the National Hemophilia Foundation’s (NHF) annual Washington Days advocacy event in March, it seemed like a great civics lesson for the 14-year-old, who has severe hemophilia A with an inhibitor.

But making the rounds on Capitol Hill came to represent much more for the family, who live in Northfield, New Hampshire. “We just wanted to explain that there are kids out there that suffer from this, and that they can’t take away the Affordable Care Act (ACA),” Cristelee says. “It was really exciting because they actually listened.” In fact, New Hampshire Sen. Jeanne Shaheen later told the family’s story in Senate testimony.

Thanks to the efforts of the Peakes and hundreds of others in the bleeding disorders community who participated in Washington Days, members of Congress are taking notice and proposing measures that protect important provisions of the ACA. The key legislative vehicle for this drive is the Protecting Pre-Existing Conditions and Making Health Care More Affordable Act of 2019. The bill (officially known as H.R. 1884) was introduced in the House on March 26 by the chairs of the three committees with jurisdiction over major healthcare programs (Energy and Commerce, Ways and Means, and Education and Labor) and is endorsed by NHF.

Pushing Back on Short-Term Health Plans

Among other provisions, this bill would reverse the expansion of short-term health plans, also known as limited-duration or “skinny” insurance. Such plans were originally intended to provide three months of temporary coverage for people who experienced a gap in their health insurance. Because of rules changes enacted in August 2018, the plans can now last for up to three years.

That means short-term plans are competing with ACA health plans offering full healthcare coverage. However, the skinny plans are not required to comply with crucial consumer protections within the ACA. Skinny plans can deny coverage or charge higher premiums based on a person’s health status, exclude important benefits, or place annual caps on benefits.

“People with hemophilia and bleeding disorders are really able to convey the message regarding annual and lifetime caps to Congress, because their care is so costly,” says Nathan Schaefer, vice president of public policy at NHF. “Many patients could reach their annual cap in February because the average cost of treating someone with severe hemophilia at this point is around $350,000 per year. The annual and lifetime caps just do not work for us.”

“The skinny insurance plans harm our community in two ways,” adds Johanna Gray, federal policy adviser to NHF. “The first is that because they don’t have to follow the ACA patient protections, such as covering pre-existing conditions, getting rid of lifetime caps and having an out-of-pocket max, these plans are inadequate for our patient community.” Skinny plans are less expensive, so patients may sign up not realizing that they are lacking in crucial ways.

For instance, Gray says, many of these plans don’t cover prescription drugs.

Second, Gray says, the plans split the risk pool. “Younger, healthier people might be attracted to a skinnier plan with a lower premium,” she says. “They may think they don’t need comprehensive coverage, and they then leave the risk pool. That will increase premiums for everyone and create a dual market.” The new bill is intended to stop that from happening and stabilize the healthcare market.

Gray says this issue particularly resonated with Washington Days advocates. “We fought so hard for patient protections back in 2009 and 2010, when the ACA was being written, and these plans could undermine the whole system,” she says. “That is frightening to people with bleeding disorders and their families.”

Before the ACA passed, John Peake often had to leave jobs because Seth’s care started bumping up against their healthcare plan’s lifetime caps. “When he was looking for a new job, if he would be offered one, I would have to call the insurance company and find out exactly what they would and wouldn’t cover,” Cristelee says. “Now my husband is able to stay at the same job with the same insurance. We sleep better knowing that we have insurance that’s going to cover everything we need it to.”

The new bill also provides for increased access to federally funded healthcare navigators, individuals or organizations that help consumers navigate the complexities of insurance. Under the current administration, the number of navigators has been slashed significantly. Yet “without navigators, people don’t sign up,” Schaefer says.

Funding for HTCs

Another significant legislative priority for NHF is continued federal funding for the nationwide network of hemophilia treatment centers (HTCs). The Health Resources and Services Administration’s Maternal and Child Health Bureau provides funding for the 140 HTCs, which serve more than 70,000 patients.

HTCs provide integrated care from a multidisciplinary team, including hematologists, nurses, physical therapists and social workers, all with specialized training in treating bleeding disorders. A 2018 survey of 4,800 HTC patients found they are overwhelmingly satisfied with the care they receive at the centers.

“The bleeding disorders community really relies upon the expertise of the medical providers at the HTC,” Schaefer says. “Data from the CDC shows that the morbidity and mortality rates of patients who access care at an HTC are 40% better than those who don’t get care at an HTC.”

Because HTCs are funded by HRSA, they are eligible to participate in the 340B Drug Discount Program, which allows drugs to be purchased at a discount and the money saved to be used for comprehensive care. NHF is requesting that HRSA maintain the current funding levels for HTCs of $4.9 million and continue the participation of HTCs in the 340B program.

In addition, the Centers for Disease Control and Prevention’s Division of Blood Disorders funds HTC surveillance and prevention activities and supports outreach and education programs provided by bleeding disorders organizations. In recent years, the CDC has focused on the challenges of inhibitors. NHF is recommending that funding levels—$5 million for HTCs and $3.5 million for bleeding disorders-related activities—continue.

“We generally advocate to maintain funding,” Gray says. “Part of what we do at Washington Days is to communicate the importance of these programs. For a rare disease patient community to have these federal programs dedicated to us is pretty extraordinary. It’s something that we have to protect.”

Cristelee Peake agrees. “Everybody needs to learn to stand up for themselves and advocate a little bit better,” she says. “I’m really glad that I got the chance to see that in action. And I can tell you that Seth and I will be very involved in it now. It feels like we are doing our best to change things.”

At the State Level

Along with federal initiatives, NHF and its chapters monitor legislative activity and advocate for people with bleeding disorders on the state level.

One significant issue that’s become a state-level priority is step therapy bills. “The principle behind these measures is that if you need to get to a treatment product, first you need to try these other products and then demonstrate that they’ve been unsuccessful for your condition,” says Nathan Schaefer, vice president of public policy at NHF.

Medicaid restrictions present a similar concern. Some 14 states have implemented preferred drug lists (PDL), where patients may have to demonstrate failure on a preferred drug before being allowed to use medications that work for them.

One complication is that states differ in what constitutes “failure” on a treatment. “Some specify clinical authorization by a medical provider,” Schaefer says, “and in others the patient has to have failed twice, and then if those two don’t work, then you can get to a non-preferred product.” That could be disastrous for a patient with a bleeding disorder.

According to Schaefer, good step therapy legislation ensures that there is a clear process outlined for patients to access whatever product their medical provider deems necessary for them. “We want the decisions about what products people are using and where people are accessing their care to be decisions between a patient and a medical provider, not between a patient and an insurance plan or a Medicaid office,” he says.

These issues present further opportunities for patients to meet with legislators and provide testimony about their healthcare concerns. The efforts can make a difference. Schaefer remembers a mother of a boy with severe hemophilia who testified before a Connecticut state legislative committee last fall. Afterward, Schaefer says, the state did implement a PDL, but all of the hemophilia drugs were put on the preferred list. Other state advocacy efforts have helped to delay similar proposals.

“Our advocates have stayed engaged over the last several years through all of the policy challenges we’ve faced,” says policy adviser Johanna Gray. “I’m always encouraged by their strength and passion.”