Advocate for Chronic Disease & Invisible Illness
Chronic Disease Day is an opportunity for legislators to pledge to address issues that impact across the entire chronic disease community. These issues include funding needed medical research and public health programs and advancing legislation that supports a patient’s ability to access the care they need.
While we reflect on recent progress and opportunities for further advancement around July 10th, our community of supporters work year-round to educate policymakers about contemporary issues and to use our stories and collective voice to advocate for issues that impact across the chronic disease community.
Fiscal Year (FY) 2027 Funding Recommendations
- Provide the Centers for Disease Control and Prevention (CDC) with at least a $2.4 billion increase in discretionary funding for FY 2027 to bring overall agency funding up to a minimum of $11.6 billion annually.
- Provide established CDC Centers and Programs, such as the National Center for Chronic Disease Prevention and Health Promotion, with proportional funding increases.
- Provide the emerging CDC Chronic Disease Education and Awareness (CDEA) program with $6.5 million for FY 2027, an increase of $2 million over FY 2026.
- Provide the National Institutes of Health (NIH) with at least $51.3 billion in funding and a sustained commitment to support additional research, an 8.7% increase over FY 2026 with proportional increases for various Institutes and Centers.
Notable Chronic Disease Legislation
Safe Step Act (S. 2903/H.R. 5509)–This bill requires group health plans to establish a clear process for individuals to request an exception to medication step-therapy protocol. The legislation established a strict timeline forcing insurer to respond to exception requests within 24 to 72 hours Step therapy is a process by which insurers require patients to try one or more less-expensive medications before they can access the medicine prescribed by their provider. The bill specifies six circumstances in which an exception to step therapy must be granted, including if the treatment has been ineffective, is expected to be ineffective, will cause an adverse reaction, will prevent the individual from performing daily activities, or if there are other circumstances as determined by the Employee Benefits Security Administration. The bill also specifies timelines under which plans must respond to such requests.
HELP Copays Act (S.864/H.R. 6423)-This bill would require health insurance plans to apply copay assistance to an individual’s cost-sharing obligations, such as their deductible and out-of-pocket maximum. Copay accumulator programs, which do not count assistance toward deductibles or out-of-pocket maximums, would be banned for health insurance plans regulated at the federal level, such as those offered by large employers. The bill is designed to make it easier for people with chronic conditions to afford their medications. Copay assistance programs are often offered by pharmaceutical companies to help patients pay for their medications. However, these programs are not always counted toward a patient’s deductible or out-of-pocket maximum, which can make it difficult for patients to afford their medications.
The Personal Health Investment Today (PHIT) Act (H.R. 2369/S.1144)-This bill would allow a medical care tax deduction for up to $1,000 ($2,000 for a joint return or a head of household) of qualified sports and fitness expenses per year. The bill defines qualified sports and fitness expenses as amounts paid exclusively for participating in a physical activity, including fitness facility memberships, physical exercise or activity programs, or equipment for a physical exercise or activity program. The PHIT Act would also allow flexible spending accounts (FSAs) and health savings accounts (HSAs) to pay for health club memberships, fitness equipment, exercise videos, and youth sports leagues. This would make it easier for people to afford to participate in physical activities, which has been shown to have several health benefits. Additional information can be found: https://ncys.org/advocacy/phit/.
The Medicaid VBPs for Patient’s (MVP) Act (S.1637/H.R. 7871)–This legislation protects access to gene therapies through the Medicaid Program by allowing the Medicaid Program to recoup payments for the therapy if the outcome is not successful. Senate offices please co- sponsor the MVP Act (S. 1637) by contacting the office of Senator Tim Scott (R-SC) or Senator Maggie Hassan (D-NH). House offices, please cosponsor the MVP Act (H.R. 7871) by contacting the office of Congressman Brett Guthrie (R-KY).
Contact Justin Wilson at jwilson@mygooddays.org to learn more about and get involved in our advocacy initiatives.
