by James Romano Dir. of Government Relations

Published: Lifelines for Health Spring 2019

Since the passage of the Patient Protection and Affordable Care Act (Public Law, 111-148) the pendulum has swung on the perception of patient assistance programs. Once a beacon of hope in the social safety net, governmental sympathy and stakeholder interest has largely vanished. Today the conventional wisdom for these programs have oscillated between the false theory that these programs are somehow no longer necessary or needed to the dangerous notion that patient assistance actually hurts patients. Health Insurance Providers in their quest to reduce their costs and maximize profits have influenced and benefited from the pendulum shift. The health insurance industry will not be satisfied until as many patients with rare disorders and chronic conditions are forcibly transitioned onto public programs such as Medicare and Medicaid.

Patient Services Incorporated has met the challenge
laid down by the much larger health insurance industry in an attempt to protect the patient assistance model that
the organization founded 30 years ago. PSI is a national nonprofit patient assistance organization that raises private donations into disorder specific programs. PSI utilizes those donations to provide financial assistance to patients to subsidize the high cost of health insurance premiums; out of pocket expenses such as deductibles, copayments and co- insurance; as well as ancillary supplies and travel expenses. PSI also helps patients to obtain their disability benefits for certain conditions through our ACCESS Program.

This Pendulum shift first manifested itself approximately 5 years ago in 2014 with the rule promulgated by the Centers for Medicare and Medicaid Services (CMS) entitled: Patient Protection and Affordable Care Act: Third Party Payment of Qualified Health Plan Premiums. This rule mandated that health insurance providers in the state and federal insurance marketplaces accept insurance premium and cost sharing assistance from State Ryan White/HIV Programs; Indian Tribes & Tribal Organizations; as well as any other government program. The rule also states that health insurance providers can impose contractual prohibitions onto any other entities such as nonprofit organizations like PSI. This rule serves to undermine the reform of the pre-existing condition exclusion included in the Affordable Care Act because this policy disproportionately affects those with rare and chronic illnesses who rely on these programs to obtain needed treatments and therapies while maintaining their way of life.

Since the release of the rule over 100 plans in 43 states have implemented the prohibition. Insurance providers have gone to the extremes while implementing this prohibition including threatening patients with litigation to recoup claims and forcing patients to sign attestations under the penalty of perjury that the patient receives no outside support in paying their premium. The target of this nefarious rule are people with rare and chronic conditions living their lives as best they can while Health Insurance providers are developing ways to prevent them from obtaining the needed treatments. Even though PSI has fought to modify or overturn the rule, the insurance industry has been emboldened in their actions and have attempted to spread the prohibition into other insurance coverage markets including the Medicare Supplement/ Medigap market as well as Non-ACA individual market. Besides the CMS Rule, health insurance providers have looked for other creative ways to limit access to specialty treatments for patients again placing profits above lives. The implementation of Copayment Accumulators; Fail First policies and prohibitions on copayment cards by manufacturers are examples of this creativity to push more costs onto patients. These initiatives have one common thread running through them—ensuring that patients must jump through more hoops to obtain their treatment or worse preventing the access of treatments all together. PSI has stepped forward to defend the patient assistance model we created. The mission of PSI in the advocacy field has been to advocate for government policies at the state and federal level that will end these egregious practices and ensure easier access for patients living with rare and chronic illnesses.

PSI was the first organization to recognize the threat the CMS rule would pose to patient assistance. PSI has led the advocacy efforts over the last five years to overturn this rule. PSI created the Marketplace Access Project Coalition to bring together like-minded patient advocacy groups to support legislative efforts to help patients utilize these programs. PSI was successful in developing the Access to Marketplace Insurance Act (HR 3742 & HR 3976), a bill that has been introduced in the last two Congresses by Kevin Cramer (R-ND). Congressman, now Senator, Cramer recognized the need to strengthen the social safety net not diminish it and coined our battle cry—Let Charities be Charitable. This legislation would amend the Affordable Care Act and add three more entities to the list that CMS established through the rule. Health insurance providers must accept premium and cost sharing assistance from the entities stated in the rule but also three additional entities-- Non-Profit Organizations; Places of Worship and Civic Organizations. The legislation had strong bipartisan support and garnered 147 and 177 cosponsors respectively in Congress. However, the health insurance plans worked overtime to prevent the legislation from passing.

Since 2012, PSI has hosted our yearly advocacy fly-in to promote the model and assistance programs. PSI brings patients from all over the country to advocate with their Members of Congress and Senators on the importance of the patient assistance they receive and what would happen if that assistance was limited or even prohibited. To continue to advocate for assistance for patients, PSI is partnering with other entities such as the Hereditary Angioedema Association; the Pulmonary Hypertension Association and Good Days to form the coalition—United for Charitable Assistance. UCA will work on the state and federal levels to promote and protect charitable assistance for patients for many years to come.

PSI has worked to understand why CMS has promulgated such a rule. CMS has stated that they are concerned that charities would flood the plans with sick patients—contrary to the stated goals of the Affordable Care Act. PSI has worked with Congress through the House and Senate Appropriations Committees to include report language in the FY 2016 and FY 2017 Joint Explanatory Statements, asking the agency to explain to Congress its reasoning for excluding nonprofit organizations from the listed entities. CMS ignored the request for information from Congress and never provided any explanation. Congress continued to press the issue sending at least six sign-on letters including the signatures of hundreds of Members of Congress asking for CMS to modify the rule. To this moment CMS has ignored Congress and has ignored the calls from the patient advocacy community to fix this rule.

PSI will continue its leadership in passing the Access to Marketplace Insurance Act as well as promoting charitable assistance in Congress and in state legislatures. If you would like to become involved, please contact the PSI Government Relations team at Advocacy@uneedpsi.org.

Since the authorship of this article, we have the following updates to add.

In March 2019, Virginia and West Virginia became the first two (2) states to ban copay accumulators. Several states, AZ, CT, IN, KY and RI, have pending state legislation to ban as well!

On April 18th, CMS released their Notice of Benefit and Payment Parameters Rule for 2020, which limits use of brand name drugs that have equally effective generics. Because factor does not have a generic alternative, it should be exempt from the Accumulator Adjuster.

https://www.cms.gov/newsroom/press-releases/cms- issues-final-rule-2020-annual-notice-benefit-and-payment- parameters

Editor’s note:

Please view the PSI You Tube Accumulator Adjustor video on this topic:

https://video.search.yahoo.com/yhs/search?fr=yhs-sz-002&hsimp=yhs-002&hsp art=sz&p=PSI+you+tube+accumulator+adjustor - id=1&vid=563fcff548e5a6ed0b 912afc8cc8247f&action=click

or NHF’s YouTube video

https://www.hemophilia.org/Newsroom/Advocacy-Legislative-News/Copay- Accumulator-Adjustments-What-are-they-and-how-they-can-affect-you