Get Involved 3 Avenues to Finding Copay Assistance Advocating for PH Patients In the New Congress

The 2022 mid-term election brought in a new wave of legislators to Congress. The Pulmonary Hypertension Association (PHA) remains committed to bringing forward the concerns of the PH community as Congress puts forth legislation this year.

PHA began the new year by sending welcome letters to newly elected officials, educating them about pulmonary hypertension (PH) and laying out PHA’s legislative priorities for the 118th session of Congress. Read about our priorities:

Health Care Driven By Clinical Judgment

Too often, insurers restrict access to physician-prescribed treatment through prior authorization requirements and step therapy policies.

PHA continues to support the Safe Step Act, which would allow doctors in some cases to bypass step therapy requirements. Those situations include when patients have tried lowertier therapies or when delaying the prescribed treatment would harm the patient.

Last year, the Safe Step Act gained significant congressional support but wasn’t brought forward for a vote.

PHA will work with other advocacy groups to reintroduce the bill and gather enough support in the House and Senate to approve the legislation.

Financial Assistance For Medication Copays

Copay costs can impede PH treatment even when health insurance covers the medication and less expensive generic versions are available.

PHA supports the Help Ensure Lower Patient Copays (or H.E.L.P. Copays) Act, which was introduced in the House in late 2021. The bill would close loopholes some insurers have used to “double-dip.” That means they accept copayments from charitable assistance foundations and other third parties, but they don’t count the copayments toward out-of-pocket deductibles.

Ph Research And Awareness

Each year PHA asks Congress to fund the National Institutes of Health to the fullest extent possible so it can allocate more money for PH research. PHA also supports Centers for Disease Control and Infection funding for PH awareness to secure accurate and timely diagnosis.

Supplemental Oxygen Access

Supplemental oxygen is critical for many in the PH community. Oxygen equipment covered by insurance often is cumbersome, and their bulk and weight make activities outside the home difficult. Liquid oxygen, typically the best option for people with high-flow needs, has become so hard to access that many clinicians no longer prescribe it.

PHA urges Congress to ensure people who need oxygen receive it in the manner that best suits their needs and improves quality of life.

Does your member of Congress know about pulmonary hypertension (PH)? Lawmakers often aren’t aware of PH. And they don’t understand its severity until people affected by the disease share their stories.

While Pulmonary Hypertension Association staff can explain how legislation would affect people with PH, personal experiences from patients, caregivers and health care providers are more compelling. That’s why it’s important to connect with your elected officials, share your experience and explain the real-life impact of proposed policies.

Use PHA’s Action Center to share your story, and look up and email your Congress members. Visit PHAssociation. org/advocate.

If you’re interested in deepening your connection with your legislators through a phone call or video meeting, email Advocacy@ PHAssociation.org, or call 301-5653004 x758.

Securing financial assistance for pulmonary hypertension (PH) medication copayments can be challenging. The best options for financial aid differ according to each person’s health insurance coverage and prescribed treatment. Use this roadmap to begin your search:

Charitable Assistance Foundations

Nonprofit foundations are common sources of copay assistance. Pay attention to the assistance offered and the eligibility requirements when applying for a particular grant. Some grants cover specific dollar amounts, while others ensure as much coverage as you need for the year. Other sources limit eligibility only to those with Medicare or Medicaid, while others accept applicants regardless of insurance type.

Tip: Sign up with Fund Finder to get notified as soon as a grant opens up. Visit fundfinder.panfoundation.org or call 866-316-7263 to register for email and/or text notifications when PH grants become available.

Manufacturer Assistance Programs

Drug manufacturers sometimes provide coupons or discounts on medications. The discounts more frequently apply to people with commercial health insurance, typically provided through an employer.

However, some manufacturers also help uninsured or under-insured people covered by Medicare. Always check whether the maker of your medicine offers an assistance program, especially if all PH grants are closed when you need help.

Tip: Visit PHAssociation.org/help to see available manufacturer programs listed alphabetically by medication brand name.

Specialty Pharmacy Hardship Programs

Typically offered as a last resort, specialty pharmacies sometimes provide assistance to patients who have no other options. When contacting your specialty pharmacy, it’s important to tell them that you’ve attempted to secure funding from nonprofit grants and the manufacturer, but no assistance is available.

Tip: Contact your care team as soon as you know you might have trouble covering your copay. Many PH care teams are experienced in finding copay coverage for patients and can be a great resource.

PHA’s Treatment Access program is here to help you find financial assistance. Call 301-565-3004 x758 or email Insurance@ PHAssociation.org.