Dear Members of the House Commerce and Consumer Affairs Committee:
On behalf of the over 230 people with cystic fibrosis in New Hampshire, we write to provide comments on SB 354, as amended on May 7th. If passed, SB 354 would only require insurers to apply financial assistance from independent charity programs to out-of-pocket maximums and other patient cost-sharing requirements, which is significantly more limited than similar policies passed in other states. While the Foundation supports New Hampshire’s intent to ban co-pay accumulators and improve access to care, we request that this committee amend SB 354 to expand the definition of third-party assistance and provide a pathway for the accumulator ban to apply to drugs with generic or biologic equivalents when these drugs are medically necessary. By doing so, you will help ensure that patients’ health and financial well-being are not sacrificed in the ongoing, systemic debate between payers and pharmaceutical companies about prescription drug pricing.
About cystic fibrosis and copay accumulator programs
Cystic fibrosis is a life-threatening genetic disease that affects nearly 40,000 children and adults in the United States, and CF can affect people of every racial and ethnic group. CF causes the body to produce thick, sticky mucus that clogs the lungs and digestive system, which can lead to life-threatening infections. Cystic fibrosis is both serious and progressive; lung damage caused by infection is irreversible and can have a lasting impact on length and quality of life. As a complex, multi-system condition, CF requires targeted, specialized treatment and medications. While advances in CF care are helping people live longer, healthier lives, we also know that the cost of care is a barrier to care for many people with the disease.
Accumulator programs prevent third-party payments from counting towards deductibles and out-of-pocket limits and therefore increase out-of-pocket costs for patients. According to a survey conducted by George Washington University of over 1,800 people living with CF and their families, nearly half reported delaying or forgoing care — including skipping medication doses, taking less medicine than prescribed, delaying filling a prescription, or skipping a treatment altogether — due to cost concerns. Because CF is a progressive disease, patients who delay or forgo treatment face increased risk of lung exacerbations, irreversible lung damage, and costly hospitalizations.
We recognize that copay assistance is problematic, as it allows pharmaceutical companies to maintain high prices while shielding many individual patients from the costs. It is reasonable that payers would push back against this tactic, as drug costs continue to increase. Nevertheless, patients with chronic diseases like CF often struggle to afford their care and rely on copay assistance to access vital medications. While we support the intent of SB 354 to improve access to care, the current bill would do little to reduce financial burden on people with CF, as it exempts the most commonly used forms of financial assistance and only applies to a narrow subset of therapies. To address these concerns, we request the following changes to SB 354:
Require all third-party financial assistance to apply to patients' cost-sharing obligations
SB 354 only requires financial assistance apply to a patient’s deductible and out-of-pocket maximum when it comes from “independent charity patient assistance programs” that are either funded directly or indirectly by pharmaceutical manufacturers and are offered for the full plan year. We are concerned that this definition is overly restrictive and excludes the most common sources of financial help for people with CF. Charity programs are often restricted to patients who meet specific income eligibility criteria and routinely close to new and re-enrollees due to limited funds. As a result, many patients rely on direct manufacturer assistance as the only option to afford their treatments. We urge New Hampshire to join the vast majority of states that have passed copay accumulator bans, all of which require payers to apply third-party assistance from any source to patients’ cost-sharing requirements.
We are also concerned that the definition of eligible third-party assistance specifies that the organization must “offer[s] the assistance to the enrollee for the full plan year.” Nonprofit assistance programs are often offered on a rolling basis and as funds are available, not necessarily aligning with a health insurance plan year. This requirement could therefore render the important financial protections included in SB 354 unenforceable for many patients who depend on nonprofit financial assistance to afford their medications. We urge you to amend SB 354 to remove this language.
Provide a pathway to apply financial assistance for drugs with generic or biologic equivalents
As currently written, SB 354 would not require financial assistance to apply to a drug where there is a “generic alternative, biosimilar, or other covered alternative available.” We request that you remove “other covered alternative” from the definition of drugs that would be subject to the copay accumulator ban. This language is overly broad and could be misinterpreted to include any therapy used to treat the same condition, even if those therapies may not be clinically interchangeable for a patient.
We also request that you amend SB 354 to ensure there is a pathway for third-party financial assistance to apply to a patient’s cost-sharing obligations for drugs with generic equivalents when patients get access through step therapy or prior authorization. People with CF and their CF physicians are best positioned to determine which treatments will be most effective for each individual given their health status, treatment regimen, and individual needs. While we appreciate the need to use generics whenever possible, patients can respond differently and these therapies may not always be clinically appropriate.
We understand the challenge insurers face in managing the rising cost of drugs, and that co-pay assistance programs mask bigger cost and affordability issues in the health care system. However, cost containment strategies that further burden patients are unacceptable. We urge you to amend SB 354 to help ensure continued access to quality, specialty care for people with CF in New Hampshire.