Charting Your Course

NHF helps patients navigate health insurance options
Author: Kadesha Thomas Smith

Having the right health insurance can mean the difference between smooth sailing and being shipwrecked when it comes to coverage for factor, medical appointments, procedures and hospitalizations.

That starts with knowing what kind of health coverage is needed. There are many complex factors to consider, such as deductibles, co-insurance, co-pays, premiums and maximum out-of-pocket costs. However, only about 14% of Americans know what all these terms mean, according to a June 2013 study published in the Journal of Health Economics.

“Our community depends on medical care, so we have to help them get a better understanding,” says Michelle Rice, vice president of public policy and stakeholder relations at the National Hemophilia Foundation (NHF).

Despite the confusion, the Patient Protection and Affordable Care Act (ACA), passed in March 2010, aims to make health insurance more accessible for people who are either uninsured or underinsured.

First, the ACA prohibits health insurance companies from denying coverage to people with pre-existing conditions. It also eliminates rescission, an insurance company practice of retroactively cancelling coverage for people with bleeding disorders. Second, it created state health insurance exchanges, also known as marketplaces. Starting in October 2013, people who were not insured through their employers, Medicaid or Medicare could shop for health insurance plans online, see all their options and buy what fits their needs.

In August 2013, just two months before the health insurance exchange plans were available for enrollment, 67% of Americans said they knew “only a little” or “nothing at all” about the health insurance exchanges, reports the Kaiser Family Foundation, a bipartisan healthcare policy think tank. By March 2014, the last month to enroll, those numbers were relatively unchanged.

Although about 8 million people had signed up for a plan through health insurance exchanges by the enrollment deadline of March 31, 2014, they found the process confusing, with many unanswered questions.

NHF has steadily increased its efforts to educate various groups within the bleeding disorders community about health insurance. The goal is to help people with bleeding disorders sail smoothly through the process of choosing the best health insurance for them and their family.

Helpful toolkit for navigation

Some families have gone into sticker shock because of a medical bill or out-of-pocket expense, even though they had health insurance, says Marla Feinstein, public policy analyst at NHF. “Even when they track the out-of-pocket costs, some forget about how much they are paying in deductibles and premiums,” she says. “Those numbers add up.”

In 2010, NHF launched the Personal Health Insurance Toolkit to help families figure out what they need in a health insurance plan for the whole family, not solely the affected person. “Mom doesn’t think about, ‘What if I go to the doctor and need an expensive allergy medication?’ ” Feinstein says. She may find out later that her prescription was not included because she had only looked at plans to cover her son’s hemophilia, Feinstein warns. “We’re asking consumers to step back and look at everyone else in their household, even those who are unaffected.”

The toolkit was updated and launched in February 2014 to include information about the health insurance exchanges. Available in English and Spanish, it gives families a comprehensive view of their entire family’s healthcare needs and expenses. NHF policy analysts regularly host sessions with chapters to familiarize members with the online toolkit and complete an accompanying workbook.

Resources in the kit include a glossary and health plan cost comparison sheet. A personal health insurance stat sheet helps families estimate their healthcare expenses based on the previous year. Each section of the toolkit walks patients and family members through their own assessment until they arrive at a solid picture of what their health insurance plan should include. Knowing what’s needed then makes the choice much easier, whether it’s an employer-based plan or coverage from the health insurance marketplace.

This resource can also help consumers avoid some of these most common pitfalls, cited in the 2013 study in the Journal of Health Economics:

Picking a plan that isn’t the best option

“Individuals often stick with the status quo, maintaining the same coverage they had in the past even when superior options are available,” the study authors wrote. Or, they get a recommendation from a family member who is no more informed than they are.

Making choices that aren’t cost-effective

Families may go to the emergency room (ER) when an urgent care center would have been more appropriate, the authors write. The high cost of ER care likely could have been avoided.

Not reading the fine print

Not understanding how a health insurance plan works leaves people at risk for assuming a service or medication is covered when it’s not. Insurance companies may display the features and benefits more prominently than the costs and risks. This also leads to more surprisingly high bills.

Most people encounter these issues after the fact, Feinstein says. “Some situations are just unknowns, but then there are situations where you can think before you buy,” she says. “That’s what the toolkit is designed to do.”

On board with savvy social workers

To help educate social workers on the nuances of health insurance, NHF began hosting the annual Social Work Insurance and Reimbursement Conference in 2006. It started as two one-day conferences for hemophilia treatment center (HTC) social workers with about 20 attendees. Now, the two conferences are two days each and have expanded to include chapter leaders. The most recent conference in January 2014, which focused on the health insurance exchanges, drew about 100 attendees. The growth shows how necessary the conferences are for social workers, who are often at the helm, helping families get health insurance.

“These conferences are a gift,” says Eric Iglewski, LMSW, a social worker at the Mary M. Gooley Hemophilia Center in Rochester, New York. He is chair of the NHF Social Work Working Group. “People are desperate for information in an ever-changing landscape.”

The themes for the conference have recently shifted from improving clinical and communication issues to navigating healthcare policy and insurance. The most recent speaker lineup included experts from the government’s Centers for Medicare & Medicaid Services (CMS), healthcare policy consulting firms and managed care organizations.

“We try to provide social workers with education and knowledge, number one, so they can go back and educate their patients,” says Linda Gammage, MSW, LCSW, chair of the planning committee for the conferences. Advocacy issues are usually on the docket at these conferences. “ When patients are talking with insurance companies or want to file an appeal, they feel confident enough to take those steps,” she says.

Certified advice on health insurance

Further complicating things, each state has its own requirements and administrative nuances for health insurance, whether it comes through the exchange, an employer, Medicaid or Medicare. Social workers at HTCs not only have to know the health insurance rules for their own state, but also for patients from bordering states.

One of the most common questions is whether factor is covered, says Nicole Quinn-Gato, JD, NHF senior public policy analyst. To address this, NHF partnered with Patient Services, Inc. (PSI), in fall 2013 to certify social workers who want to become certified application counselors (CACs). “It’s for social workers at HTCs, and some chapter leaders, who want to help patients understand health insurance options,” Quinn-Gato explains.

PSI, a nonprofit patient assistance organization based in Midlothian, Virginia, has a track record of assisting patients with chronic illnesses by providing financial assistance programs. As a CAC Designated Organization, PSI can certify its staff and volunteers as CACs to assist patients.

The curriculum for the five-hour online training was developed by CMS. It contains seven modules, including background information on the marketplace, assisting individuals looking at plans, and privacy and security standards. Some states require additional training and certification. “They receive in-depth information on the ins and outs of the marketplace,” says Tiara Greene, MSEd, program manager at PSI.

Social workers must complete the required training and pass certain exams to earn the certification. Access to the training modules helps them to stay current on the information. CACs can participate in weekly conference calls with CMS to stay abreast of any upcoming changes for the health insurance exchanges. Further, social workers who are at HTCs and serve patients from more than one state may need to earn additional certificates.

“I try to stay on top of state changes as different legislation passes,” Greene says. “Then, we report that to the CACs.”

Finding your way

The goal of the training, however, is not to have social workers telling patients which plan to pick. “This needs to be the patient’s decision,” Quinn-Gato says. It starts with using NHF’s toolkit to outline the family’s healthcare needs, then taking that information to the CAC at the local HTC. “It’s important to do that homework first. Then, the social worker can help patients narrow the scope,” she says.

The ultimate goal is to make sure that members of the bleeding disorders community don’t get swamped by the sea of health insurance information and miss out on medical care. With NHF extending more comprehensive health insurance education efforts to members of the bleeding disorders community, patients will hopefully feel more comfortable going through the selection process with someone they trust who understands their specific medical needs and can help them chart their course.

“We don’t want our community to feel like they are going into the unknown,” Quinn-Gato says. “We want them to know we’re here with them.”