At Rise & Rally, we are deeply involved in advocating for policies that address the critical needs of individuals with chronic, complex, and rare diseases. We are currently working to get several key pieces of legislation passed, including bills that aim to increase funding for rare disease research, improve access to affordable medications, and enhance support services for patients and caregivers. Additionally, we actively oppose policies that threaten to reduce healthcare coverage or limit patient access to necessary treatments. Understanding these policy issues is the first step in our advocacy efforts. By staying informed about the legislative landscape, we can better strategize and mobilize our community to support or challenge these policies effectively.
Taking action on these policy issues is crucial for driving systemic change. We encourage you to get involved by participating in our advocacy campaigns, contacting your local representatives, and spreading awareness about the importance of these issues. Your voice can make a significant impact in shaping healthcare policies that prioritize the well-being of those with chronic, complex, and rare conditions. Below, you will find detailed information about the current policies we are focused on, as well as actionable steps you can take to support our efforts. Together, we can advocate for a healthcare system that truly meets the needs of all individuals, ensuring equitable access to care and support.
THE SAFE STEP ACT - H.R.2630, S.652
The Safe Step Act requires health insurance plans to grant exceptions to step-therapy protocols under specific conditions, such as when a required treatment is ineffective or causes adverse reactions. This ensures that patients receive timely and effective treatments without unnecessary delays.
THE CREATING HOPE REAUTHORIZATION ACT - H.R.7384
The Creating Hope Reauthorization Act extends the FDA’s priority review voucher program until FY2029, providing ongoing incentives for drug manufacturers to develop treatments for rare pediatric diseases. This extension ensures expedited review and faster access to new treatments for these patients.
THE BENEFIT ACT - H.R.1092, S.526
The BENEFIT Act requires the FDA to consider patient experience data in its risk-benefit assessment framework for new drug approvals. It also mandates that the FDA’s public statements on drug approvals include how patient experience data was used, which allows for a more comprehensive understanding of how new drugs impact patients.
THE HELP COPAYS ACT - H.R.830, S.1375
The HELP Copays Act requires health insurance plans to apply various forms of financial assistance, including third-party payments, discounts, and product vouchers, toward a plan’s cost-sharing requirements. This ensures that financial support effectively reduces patients’ out-of-pocket costs.
THE PROTECT RARE ACT - H.R.6094
The PROTECT Rare Act mandates coverage for drugs used to treat rare diseases under Medicare, Medicaid, and private health insurance. To qualify, these drugs must be supported by peer-reviewed research or expert recommendations and must not be reviewed unfavorably in specified compendia or used contrary to approved labels. This ensures that patients with rare diseases have access to necessary treatments and alleviates financial barriers.
THE SAFE STEP ACT - H.R.2630, S.652
The Safe Step Act requires health insurance plans to grant exceptions to step-therapy protocols under specific conditions, such as when a required treatment is ineffective or causes adverse reactions. This ensures that patients receive timely and effective treatments without unnecessary delays.
THE CREATING HOPE REAUTHORIZATION ACT - H.R.7384
The Creating Hope Reauthorization Act extends the FDA’s priority review voucher program until FY2029, providing ongoing incentives for drug manufacturers to develop treatments for rare pediatric diseases. This extension ensures expedited review and faster access to new treatments for these patients.
THE BENEFIT ACT - H.R.1092, S.526
The BENEFIT Act requires the FDA to consider patient experience data in its risk-benefit assessment framework for new drug approvals. It also mandates that the FDA’s public statements on drug approvals include how patient experience data was used, which allows for a more comprehensive understanding of how new drugs impact patients.
THE HELP COPAYS ACT - H.R.830, S.1375
The HELP Copays Act requires health insurance plans to apply various forms of financial assistance, including third-party payments, discounts, and product vouchers, toward a plan’s cost-sharing requirements. This ensures that financial support effectively reduces patients’ out-of-pocket costs.
THE PROTECT RARE ACT - H.R.6094
The PROTECT Rare Act mandates coverage for drugs used to treat rare diseases under Medicare, Medicaid, and private health insurance. To qualify, these drugs must be supported by peer-reviewed research or expert recommendations and must not be reviewed unfavorably in specified compendia or used contrary to approved labels. This ensures that patients with rare diseases have access to necessary treatments and alleviates financial barriers.
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