Advocacy & Policy

Making your voice count.

Anyone living with rare or chronic health conditions deserves seamless access to care. Healthcare expenses have become so great that just having health insurance isn’t enough. Families simply cannot afford the copays or cost sharing required to even go to the doctor. Our goal is to protect and expand healthcare access for people, with or without health insurance.

The government, particularly your elected officials, play a crucial role shaping and modernizing healthcare policy. Decisions made in Washington impact global efforts such as the pace of medical research and treatment development, along with issues that hit closer to home including coverage, access, and out-of-pocket costs. Sharing your story and making sure lawmakers understand the unique challenges and opportunities facing you and your family is critical for individuals impacted by rare, chronic, and or costly medical conditions. Every healthcare journey is unique and one size-fits-all-solutions often overlook important considerations.

Check back often as we’ll keep this page fresh with policy updates on timely issues impacting the community and information on how you can take action or sign up to receive updates. You do not have to be personally impacted to be a strong advocate, you just need to have the courage to share your perspective and the commitment to ask for change.

Share Your Patient Story

Guiding Advocacy Efforts

Key Priorities

Medicare reform efforts to make access to care affordable.
Access to independent, charitable patient assistance programs to assist those with rare and chronic conditions.
Health equity – promoting equitable access to healthcare services (including improving health literacy).
Addressing social determinants of health.
Access to care for those with chronic and rare conditions – removing barriers that prevent patients from accessing necessary care and services.

Initiatives

Accessia Health is joining the broader patient advocacy community in calling on Congress to pass the Safe Step Act. This popular bipartisan legislation seeks to protect patients from dangerous and disruptive step therapy and fail first protocols but needs to be passed into law before the end of 2024.

Step therapy, sometimes referred to as ‘fail first’ or ‘step protocol,’ has severe consequences for patients who need care. Step therapy is a prior authorization practice where insurers require approval before covering a treatment or medication and where insurers implement tiered treatment pathways for medical conditions. Ideally, step therapy is designed to help curb unnecessary medical use and serves as a cost-management strategy.

The Safe Step Act aims to reform step therapy protocols in health plans. Although step therapy protocols aim to reduce barriers to care according to some providers, they also can create administrative burdens to medical practitioners and patients in maintaining continuity of care. The Safe Step Act would not ban step therapy; however, it would require group health plans to provide exceptions for any medication step therapy protocols. The exceptions included in the legislation include when:
- An otherwise required treatment has been ineffective;
- Such treatment is expected to be ineffective and delaying effective treatment would lead to irreversible consequences;
- Such treatment will cause or is likely to cause an adverse reaction to the individual;
- Such treatment is expected to prevent the individual from performing daily activities or occupational responsibilities;
- The individual is stable based on the prescription drugs already selected; and
- There are other circumstances as determined by the Employee Benefits Security Administration.
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Source: National Health Council
The bipartisan Help Ensure Lower Patient (HELP) Copays Act eliminates barriers to treatment for patients ensuring that they can afford the necessary and life-saving medications prescribed by their doctors.

The legislation requires health plans to count the value of copay assistance toward patient cost-sharing requirements. This would bring much-needed relief to vulnerable patients by ensuring that all payments— whether they come directly out of a patient’s pocket or with the help of copay assistance—counts towards their out-of-pocket costs.

Specifically, plans must apply third-party payments, financial assistance, discounts, product vouchers, and other reductions in out-of-pocket expenses toward the requirements.

Click here to learn more and take action.