“To the members of California's Assembly Health Committee,
On behalf of patients we represent, we are writing today to express our deep concerns about Senate Bill 1156. While we understand the intent of the legislation and share concerns about ensuring that premium assistance is making health insurance more affordable to those in need, S.B. 1156 could limit vital patient assistance and place undue burdens on patients already struggling with demanding conditions.
Californians living with chronic and life-threatening illnesses often face prohibitive costs to simply maintain their health insurance. To bridge this gap, patient assistance programs (PAPs) temporarily step in to help patients cover the costs of the care they need to effectively manage their conditions and live healthy, productive lives. Through premium and cost-sharing assistance, these independent, bona-fide charities have formed a safety net that has supported the patients who fall through the cracks of our system for almost three decades, doing so at no added cost to the public.
We all agree that skyrocketing health care costs are financially crushing patients. Unfortunately, S.B. 1156 as written would exacerbate this issue by potentially making premium assistance that thousands of Californians depend on harder to obtain. Patients who previously depended on assistance would no longer be able to afford their private plan and would need to go through the arduous process of finding coverage. Many of them will spend down to qualify for Medi-Cal, ballooning the state budget and removing the patient’s choice for coverage. Some will try to become voluntarily disabled, embarking on a 29-month approval process in which they’ll need coverage while waiting for approval. Sadly, some will rely on the emergency room for their care, negatively impacting their treatment adherence and health outcomes.
While we oppose S.B. 1156 in its current form, we believe that these modest modifications to the language will preserve both the legislation’s mission to address specific concerns about patient assistance and the mission of bona-fide charitable assistance to help rare and chronic disease patients in need. Our recommendations are as follows:
As drafted, the bill relies on regulators to define whether an entity “receives the majority of its funding from one or more financially interested health care providers” and does not define the term “health care providers,” which leaves too much ambiguity and the possibility for insurers to interpret the term as broadly as possible.
We request further explanation of which entities constitute a health care provider in the clearest terms, as to not leave ambiguity for all parties involved, and especially the regulators enforcing its provisions. Doing so will clarify whether all PAPs operating as bona-fide charities are subject to the legislation’s provisions.
To provide assistance, PAPs must be awarded a positive advisory opinion from the Office of Inspector General at the Department of Health and Human Services. In accordance with these opinions, assistance programs eligibility for patients have been based on a first-come first-serve basis centered on diagnosis and financial need. This practice has been the status quo for assistance programs for three decades and follows suit with other disease-specific government assistance programs, such as the Ryan White AIDS Drug Assistance Program (ADAP). Currently there is language in S.B. 1156 which would mandate that PAPs base assistance eligibility solely on an applicant’s income.
If PAPs are intended to comply with this legislation, we respectfully request amending this section to include diagnosis-based programs or removing that income be the sole consideration. The language as it stands could have the potential to eliminate thousands of Californians’ ability to access premium assistance programs and would also set a dangerous precedent for other states to follow. Income and financial need should be a key consideration for assistance, but diagnosis should also be included when making such an assessment.
B. 1156 requires recipients of assistance from entities subject to its provisions to annually apply for both Medi-Cal and Medicare. Once they apply and are denied, they must attest they do not qualify. This process will place a massive and undue burden on PAPs to annually verify that hundreds of recipients do not qualify for two separate public assistance programs. The administrative burden placed on non-profits to verify this volume of patients would be staggering, not to mention the potential burden placed on patients themselves. On top of dealing with a debilitating illness, requiring patients to annually apply to programs for which they are not qualified or choose not to be on is an unnecessary stressor. If a patient receiving premium assistance is not on a public program it is either because (1) they do not qualify for the program or (2) they choose not to be on the program and instead on a private plan.
We support patient choice and feel as though insurers and the State of California should not force patients onto certain programs when they have other choices. If these verifications are necessary at all, they should be done by the state itself. This would remove an additional stressor from patients, limit the administrative burden on PAPs, and allow a more robust screening process by the state.
The focus of our organizations is on the well-being of the patients we are dedicated to serving. Unfortunately, the focus of those groups supporting this legislation is solely on profit, as they have a financial incentive to remove sicker and more costly patients from their plans. We believe that a patient receiving premium assistance should be able to afford a plan that best fits their medical needs and should not be forcibly steered from that plan by insurers looking to save money. These discriminatory practices would effectively create a new pre-existing condition for high-cost patients who receive assistance, which violates the letter and spirit of the Affordable Care Act and other patient protections we fought hard to attain
On behalf of the thousands of patients we represent, we voice our concern about S.B. 1156 and, unless amended, express our opposition. We urge you to change the legislation to better serve patients and we look forward to working with you to do so.”