As the U.S. moves toward reopening in the wake of the COVID-19 pandemic, healthcare remains front and center for many people. That’s nothing new for people living with a chronic condition such as Gaucher disease. This year, several policies are being implemented or revised that significantly impact the cost of care for people with chronic diseases.
We discussed the latest policy changes with Claire Sachs, founder and Advocate-in-Chief of The Patient Advocate’s Chronicle. Sachs is an experienced policy analyst with a passion for patient advocacy and an expertise in the ins and outs of living with chronic conditions. She serves on the patient advisory boards of the American Board of Internal Medicine and United States of Care, and as an Ambassador for the Chronic Disease Coalition.
American Rescue Plan and State Healthcare Legislation: What They Mean to You
One program that has captured headlines in recent months is the American Rescue Plan Act of 2021 (ARP). This latest national stimulus includes provisions that reduce health insurance premiums for millions of people.
Also nationwide, health insurance plans have broadly implemented rules limiting copay assistance (called copay accumulator programs). Other policies (step therapy) require patients to prove that low-cost medicines don’t work before trying more expensive drugs. Many state legislatures are pushing back.
Here’s what you need to know about these policies and how they apply to you.
Individual Benefits in the American Rescue Plan
The ARP is the Biden Administration’s sweeping effort to support people across the U.S. as they continue to recover from the pandemic.
The ARP included the $1,400 direct checks issued earlier this year. It also funds $1.9 trillion in individual benefits. These benefits include extended unemployment benefits, increased SNAP (Supplemental Nutrition Assistance Program) benefits, higher child tax credits, and small-business help.
“The ARP’s provisions are not directed particularly at people with chronic conditions,” explains Sachs. “They’re directed to everyone because of the pandemic. That said, there are elements that can do a lot for the chronic disease community.”
The ARP’s Healthcare Premium Reduction and Special Enrollment Period
The most impactful healthcare change for most people may be the ARP’s health insurance premium reduction for people who purchase coverage through state or federal marketplaces. Health insurance marketplace plans are for those who don’t get insurance through an employer.
The ARP caps the cost of premiums at 8.5% of your yearly income for people earning up to 400% of the poverty rate. That income “comes out to roughly $51,000 for individuals and just under $105,000 for many families,” Sachs explains.
The Department of Health and Human Services says premiums will decrease, on average, by $50 per person per month. In an example provided by the White House, under the ARP, a family of four making $90,000 annually could see premiums that are $200 lower every month.
As many as 80% of people eligible for marketplace plans may be able to find a plan for $10 a month or less. If you haven’t had coverage, you may be able to join more than 3.6 million other Americans in being able to find an affordable plan now.
How do you get lower health insurance premiums from the ARP?
You may have received a message informing you that you are eligible for a special enrollment period through August 15. But if your plan or marketplace doesn’t contact you, you may still be eligible.
To find out if you’re eligible for premium savings, visit HealthCare.gov/more-savings. If you get insurance through a state marketplace, visit your state’s site. If you’re not sure, HealthCare.gov can direct you.
If you don’t yet have marketplace coverage, you can enroll in a new plan through August 15. And even if you’re already on a reduced-cost plan, you can still get the reductions, Sachs points out.
What records to keep to file your taxes
Early in 2022, you will receive a 1095-A form from the marketplace, which reports the premiums you paid. Also, be sure to keep your own records of all premiums you pay, advises Sachs. Compare the two figures and make sure they match up.
If you have overpaid, you may be eligible for a refund because the reduced premium is a tax credit. If you have underpaid, you may have taxes due next year. To avoid underpaying, estimate your income on the high end for eligibility calculators.
The ARP extends COBRA coverage through September 30
One specific piece of the ARP offers assistance for people eligible for Consolidated Omnibus Budget Reconciliation Act of 1985 (COBRA) coverage. COBRA lets some people keep their group health insurance for a time, usually 12 or 18 months, after leaving employment or other eligibility for group coverage.
The ARP includes a provision to fully cover COBRA insurance premiums at no cost to individuals through Sept. 30 this year. However, Sachs says that some large companies haven’t yet figured out how to get their money from the government, so former employees are still paying.
If you’re in this situation, Sachs recommends you keep thorough records of everything you pay for your health insurance. When you file your taxes next year, you may be able to recoup the unclaimed benefit then.
Other Health-Related Changes in the American Rescue Plan
Overall, the American Rescue Plan includes dozens of healthcare funding elements. (See a breakdown of its components.) Most of the ARP’s provisions don’t affect consumers directly. Its effects on healthcare include:
- Behavioral health: Support for community efforts, substance abuse prevention, and youth suicide prevention
- Healthcare workforce: Programs to expand the health workforce, including a National Health Service Corps and Nurse Corps, and support for healthcare providers
- Home and community-based services (HCBS): Higher federal assistance for state HCBS services through March 2022
- Medicare and Medicaid funding: Extended postpartum care and free COVID vaccinations, among other services
- Rural health access: Increased funding for community healthcare in underserved areas
State Healthcare Legislation and Your Healthcare Dollar
While the ARP makes temporary changes at the national level, many state legislatures are addressing other medical issues at the local level. Two of those topics are getting a lot of attention in statehouses this year:
- Copay accumulators
- Step therapy for medications
Copay accumulator policies
A copay accumulator program is an insurer’s policy that if you receive financial assistance from an external source, it doesn’t count toward your deductible. As a result, patients pay much more out of pocket. Learn more about copay accumulator programs.
Chronic Condition Impacts
For people living with chronic diseases like Gaucher disease, copay accumulators can exclude assistance received through a:
- Drug manufacturer
- Nonprofit organization (find financial support through National Gaucher Foundation and other organizations)
- Coupon card or discount program
These assistance programs have helped many people with chronic or complex conditions make ends meet. They are especially valuable for those with a high deductible health plan (HDHP). HDHP members pay high out-of-pocket costs of up to $7,050 for an individual or $14,000 for a family.
“Copay accumulator policies make things a lot less accessible, especially if you are prescribed higher-cost drugs,” Sachs says. “This affects the chronic disease community particularly because most high-cost drugs aren’t used for acute conditions but for chronic ones. These high-cost medications are prescribed as part your medical management. But these copay accumulator plans burden people by expecting them to pay more out of pocket simply due to the particular medication prescribed for treatment by their doctor – who knows them best. That’s just not fair.”
The NGF has been actively lobbying state legislatures to enact legislation that limits these programs. So far, 10 states have enacted laws that limit copay accumulator programs. Some of the first were Kentucky, Oklahoma, Arizona, Illinois, West Virginia and Virginia.
To find out about your state’s laws or bills in progress, Sachs recommends searching for your state legislative website (in your search engine, try “[state name] legislative website” or “[state] legislature”). Then go to “find a bill” or “track a bill” and search by keyword.
Step therapy for medication pricing
Another program that affects people with Gaucher disease and other chronic conditions is so-called step therapy.
“Essentially, step therapy is a protocol from insurance companies that requires patients to try and fail drugs that the insurer selects before the plan will cover the treatment prescribed by their doctor,” Sachs explains.
It’s sometimes called a “fail first” policy because people have to try and fail one or more medications before receiving a higher-priced medicine. Read more about step therapy.
“If you’ve already gone through the decision-making process with your doctor, and you’ve decided on a course of treatment, who is the insurance company to say what you should do?” Sachs asks. “For many conditions, no one can decide the best treatment from the numbers in a file, and it is dangerous to try, especially if a patient is in crisis. Delays in effective treatment can cost a life. Luckily, much of the legislation being introduced is providing paths around step therapy requirements.”
You can find out if your plan includes policies like copay accumulators or step therapy by:
- Reading your plan: Read the full summary plan description of your insurance plan. The full plan description is a 40- to 50-page document, Sachs explains—not the shiny brochure they show you first.
- Reviewing the pharmacy formulary annually (or more often): Your plan’s drug formulary can tell you what is covered or not covered for specific drugs. Terms such as class (or tier) 1, 2, and 3 drugs refer to coverage levels and step therapy. Tier 1 drugs are the cheapest and most likely to be approved or recommended in place of your physician’s prescribed course of treatment. Learn more about drug tiers, pricing and coverage.
- Calling the plan: You can call your insurer and ask about your plan’s policies to be sure you understand them.
To date, 24 states have passed legislation regulating step therapy. A federal step-therapy bill is also pending, although federal efforts have failed in previous legislative sessions.
How to Get Involved
With state and federal legislators already paying attention to these policies, your voice can make it more likely that the legislation passes. Knowing which legislation is pending or has been introduced is even more important than knowing which bills have already passed. With these bills, you can still have an effect.
To get involved, Sachs suggests:
- Contact your legislators: You can call your state or federal representatives and senators to ask them to support step therapy reform and coupon accumulator bans. Your story can make a big difference in inspiring a legislator. Sachs says a phone call, letter, or email (rather than social media) is best. Find your legislators.
Support the NGF: The National Gaucher Foundation lobbies on issues like these that matter to the quality of life of people in the chronic disease community. Supporting an organization that you know has your best interests in mind and that already has a presence can amplify your voice. Donate to NGF.
- Aimed Alliance – Copay Accumulator Programs: What Employers Need to Know [PDF] – https://www.naco.org/resources/featured/american-rescue-plan-act-funding-breakdown
- American Kidney Fund – State legislation can prevent harmful copay accumulator policies – https://www.kidneyfund.org/advocacy-blog/state-legislation-can-prevent-harmful-copay-accumulator-policies.html
- com – A Guide to Medication Formularies – https://www.goodrx.com/insurance/medication-formulary
- com – Copay Accumulator Programs: What Patients Should Know – https://www.goodrx.com/blog/copay-accumulator-programs-cms-ruling/
- gov – New, lower costs on Marketplace coverage – https://www.healthcare.gov/more-savings/
- gov – Fact Sheet: The American Rescue Plan … – https://www.hhs.gov/about/news/2021/03/12/fact-sheet-american-rescue-plan-reduces-health-care-costs-expands-access-insurance-coverage.html
- Investopedia – American Rescue Plan Makes Health Insurance Cheaper for Millions – https://www.investopedia.com/relief-law-opens-up-new-savings-for-millions-who-buy-their-own-healthcare-coverage-5120348
- Managed Healthcare Executive – New state copay accumulator laws complicate the coupon compliance landscape – https://www.managedhealthcareexecutive.com/view/new-state-copay-accumulator-laws-complicate-the-coupon-compliance-landscape
- National Association of Counties – American Rescue Plan Funding Breakdown – https://www.naco.org/resources/featured/american-rescue-plan-act-funding-breakdown
- National Patient Advocate Foundation – Step Therapy Fact Sheet [PDF] – https://www.npaf.org/wp-content/uploads/2017/10/Step-Therapy-Fact-Sheet_v4.pdf
- Policy & Medicine – HHS Final Rule a Win for Copay Accumulator Adjustment Programs – https://www.policymed.com/2020/07/hhs-final-rule-a-win-for-copay-accumulator-adjustment-programs.html
- Policy and Medicine – Step Therapy: Is It Really More Cost-Effective? – https://www.policymed.com/2019/11/step-therapy-is-it-really-more-cost-effective.html
- The White House – American Rescue Plan – https://www.whitehouse.gov/american-rescue-plan/
US Department of Labor – FAQs about COBRA premium assistance under the American Rescue Plan of 2021 – https://www.dol.gov/sites/dolgov/files/EBSA/about-ebsa/our-activities/resource-center/faqs/cobra-premium-assistance-under-arp.pdf