The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
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Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
Update - On April 27, 2023, Senators Roger Marshall (R - KS), Tim Kaine (D - VA), Joni Ernst (R - IA), Edward Markey (D - MA), and Lisa Murkowski (R - AK) introduced S.1375 in the U.S. Senate. This bill is a companion to House bill H.R.830, the HELP Copays Act, and would amend the Public Health Service Act to make clear that all financial assistance or discounts made on behalf of a patient must count toward their insurance deductible and out-of-pocket maximum. The introduction of the bill comes on the heels of IDF's 2023 Advocacy Day, where banning copay accumulators so that all copays count was a top priority and talking point.
Make your voice heard on copay accumulators by contacting your legislators in support of S.1375/H.R.830!
On February 6, 2023, a bipartisan group of legislators introduced H.R.830 in the U.S. House of Representatives. This bill requires health insurance plans to apply copay assistance to an individual's cost-sharing obligations (i.e., deductible and out-of-pocket maximum) for their insurance. 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.
In essence, H.R.830 is a reintroduction of the Help Ensure Lower Patient (HELP) Copays Act, which was first introduced as H.R. 5801 in late 2021 but failed to progress out of committee. The new bill is sponsored by Representatives Carter (R), Barragán (D), Clarke (D), Coleman (D), DeGette (D), Fitzpatrick (R), and Miller-Meeks (R). The All Copays Count Coalition sent a letter of support for the bill signed by 75 of its members, including IDF.
Lynn Albizo, IDF's Vice President of Public Policy, said, "IDF has been vocal about the harm copay accumulators pose to patient access to critical medications and has galvanized support for state-level bans across the country. We are pleased to see the HELP Copays Act introduced to fight the same health insurance practice at the federal level. IDF strongly believes that #AllCopaysCount and patients should not be penalized for using assistance programs to afford their medications."
On November 1, 2021, a bipartisan group of Congressional Representatives introduced H.R. 5801, the Help Ensure Lower Patient (HELP) Copays Act, to fight high out-of-pocket insurance costs.
A key part of the bill requires insurance providers to count co-pay assistance toward a person’s insurance deductible or out-of-pocket maximum. Co-pay assistance is payment made to a pharmacy on behalf of a patient by charities, nonprofits, and pharmaceutical manufacturers and is designed to help offset the cost of treatments and medications. Co-pay accumulator programs, which block co-pay assistance from being counted toward deductibles or out-of-pocket maximums, have been on the rise in the past couple of years.
Why should the source of payment for a medication or treatment matter? If a patient pays their co-pay directly, it counts toward their deductible or out-of-pocket maximum. Under co-pay accumulators, that same amount does not count toward deductibles or out-of-pocket maximums if paid on behalf of the patient by a third party. Requiring co-pay assistance to count prevents insurance providers from effectively collecting deductibles or out-of-pocket maximums twice — once from the third-party assistance program and again from the patient’s pocket when the assistance runs out.
In addition, co-pay accumulators undo the long-term benefits of co-pay assistance programs. When co-pay assistance counts toward deductibles or out-of-pocket maximums, it lowers the amount that patients pay out of their own pocket before insurance benefits kick in. Co-pay accumulators just kick the can down the road. Once patients exhaust co-pay assistance, they are still on the hook for their entire deductible or out-of-pocket maximum before they can access insurance benefits.
IDF is working to ban co-pay accumulators and make sure #AllCopaysCount at both the state and the federal level. This issue must be tackled at both levels because some insurance plans are regulated by the federal government, while others are regulated by state governments.
At the state level, we have successfully helped pass legislation that bans co-pay accumulators in 13 states (Arizona, Arkansas, Connecticut, Georgia, Illinois, Kentucky, Louisiana, North Carolina, Oklahoma, Tennessee, Virginia, Washington and West Virginia) and Puerto Rico.
Help us ban them at the federal level too. Let members of Congress know that you support the HELP Copays Act and ensure #AllCopaysCount!
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