Pass H.R. 460, The Patients' Access to Treatments Act
  • Petitioning U.S. House of Representatives

This petition will be delivered to:

U.S. House of Representatives
U.S. Senate

Pass H.R. 460, The Patients' Access to Treatments Act

    1. Immune Deficiency Foundation
    2. Petition by

      Immune Deficiency Foundation

      Towson, MD

The Immune Deficiency Foundation (IDF) is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research. 

Primary immunodeficiency diseases (PI) are a group of more than 200 rare, chronic genetic disorders in which part of the body’s immune system is missing or functions improperly. People with PI can face frequent health problems and often develop serious and debilitating illnesses. In the U.S., there are approximately 250,000 people diagnosed with PI and thousands more go undetected. Although some disorders present at birth or in early childhood, the disorders can affect anyone, regardless of age or gender. Today, with early diagnosis and appropriate therapies, many patients diagnosed with a PI can live healthy, productive lives. 

Many of patients with PI are unable to produce antibodies necessary to fight disease and require regular, lifelong treatments of immunoglobulin replacement (Ig) therapy. Patients in our community are losing access to the medications they desperately need due to a recent trend of shifting more healthcare cost onto the patient, also known as cost sharing. This is especially significant in patients who require medications recently classified into “specialty tiers.” 

Prescriptions for these most expensive medications and treatments are now often accompanied by hefty coinsurance costs, meaning a patient must pay a percentage of the cost of their specialty medications rather than a flat copay amount. For patients with PI who rely on Ig therapy, coinsurance of 20-50% can amount to thousands of dollars per treatment. Unfortunately, it is usually the most chronically ill patients who require specialty tier medications who bear the burden of extreme out of pocket costs.

Many patients nationwide are now forced to choose between the basic necessities of food and housing and their vital medical treatment. One patient in Michigan calculated her expenses on life-saving medication to be equivalent to an extra mortgage payment for months until the out-of-pocket limit ($6,350) was met. A mother in West Virginia was recently being forced to sell her family’s home in order to pay for their child’s specialty tier medication–one lump sum of $12,000. IDF is contacted every day by patients who cannot afford the cost of their medications. 

 

To:
U.S. House of Representatives
U.S. Senate
Pass H.R. 460, The Patients' Access to Treatments Act

Sincerely,
[Your name]

Recent signatures

    News

    1. More state legislation supports the need for H.R. 460 (PATA)

      Immune Deficiency Foundation
      Petition Organizer

      Since the time this petition began, more and more national media coverage has confirmed that legislation is desperately needed to limit the out-of-pocket expenditure for patients who rely upon lifesaving medications which are now categorized within “specialty tiers.”

      An article published this month discusses the harmful effects of coinsurance in Kentucky, also known as cost sharing, by way of a specialty tier pricing system. A bill was introduced in March of this year in The Bluegrass State to combat increased cost sharing.

      Another recent online article outlines challenges in California with regard to specialty tier medications and state level legislation Assemblyman Rich Gordon has introduced to limit out-of-pocket expenses for patients requiring these costly medications.

      Last month on the Boston Globe.com, a third article examined a bill passed into law, sponsored by Sen. Anthony Petruccelli that will “protect patients with chronic and rare diseases and put a cap on out-of-pocket expenses at $1,250 per year for an individual and $2,500 per year for a family.”

      As states across the country are noticing the problem with specialty tier pricing for medication, IDF continues to advocate for the passage of the Federal bill, H.R. 460, The Patients’ Access to Treatments Act. We still need your help to ensure that all health plans in all states limit the financial burden imposed upon patients who should not have to choose between groceries or the medicine they need to live.

      We appreciate all of the work you've done in sharing this petition so far. Please continue to share to show Congress that Federal legislation on this matter is needed urgently.

      http://www.bostonglobe.com/opinion/2014/07/24/podium-lima/sYbt2a44eSX3xNMe8G7wBP/story.html

      http://www.sacbee.com/2014/07/29/6583268/ask-emily-big-bills-lurk-in-specialty.html

      http://www.medicalnews.md/a-choice-no-one-should-have-to-make/

    2. Reached 5,000 signatures
    3. Congress is Standing With Us

      Immune Deficiency Foundation
      Petition Organizer

      Two new co-sponsors in the House have signed on to H.R. 460, The Patients’ Access to Treatments Act (PATA) since this petition began. The total number of cosponsors is now 135!

      Every day, our Members of Congress hear from thousands of constituents with serious issues and valuable causes. Raising our voices and raising awareness of the impact this legislation will have on Americans throughout the country has inspired these 135 Members of Congress to stand with us in support of HR 460.

      With over 4,700 signatures, we still need your help to make sure Congress recognizes the significance of this bill. Please continue to share with friends and family, special interest groups, neighbors, teachers, and colleagues. This bill will improve the lives of millions of Americans.

      Thank you for your continued support, IDF is so glad to have you on our team!

    4. Reached 4,000 signatures
    5. H.R. 460 Would Improve Access to Life-Saving Treatments for Millions

      Immune Deficiency Foundation
      Petition Organizer

      With your support this petition is now supported by over 3000 signatures! IDF can’t thank you enough for signing and sharing, however, we know we can get even more support for protecting patients’ access to lifesaving treatments. H.R. 460, The Patients’ Access to Treatments Act (PATA), is not exclusive to protecting access to lifesaving medications and therapies for patients with a primary immunodeficiency, but rather it’s legislation that protects millions of patients with a wide range of chronic illnesses.

      IDF is a member of the Coalition for Accessible Treatments (CAT), composed of professional medical associations and patient organizations. Together we champion the needs of our patients to Congress and advocate for passage of H.R. 460. Please take a minute to review the list below of organizations working with IDF in promoting this legislation which comes to the aid of so many people facing challenges in obtaining the care so urgently needed.

      Please continue to share with new groups to make impact; your voice can make change!

      Coalition for Accessible Treatments (CAT):

      American Academy of Dermatology Association
      American Academy of Neurology
      American Academy of Pediatrics
      American Autoimmune Related Diseases Association
      American College of Rheumatology
      American Plasma Users Coalition
      Arthritis Foundation
      Crohn's and Colitis Foundation of America
      Colon Cancer Alliance
      GBS/CIDP Foundation International
      Hemophilia Federation of America
      Immune Deficiency Foundation
      Leukemia & Lymphoma Society
      Lupus Foundation of America
      National Hemophilia Foundation
      National Multiple Sclerosis Society
      National Organization for Rare Disorders
      National Psoriasis Foundation
      Patient Services Incorporated
      Pulmonary Hypertension Association
      Sjögren's Syndrome Foundation
      Spondylitis Association of America
      The Alliance for Patient Advocacy
      US Hereditary Angioedema Association

    6. Reached 3,000 signatures
    7. Update: Almost 2,000 Signatures in Less than One Week

      Immune Deficiency Foundation
      Petition Organizer

      Thanks to such enthusiastic participation from the primary immunodeficiency (PI) community, we have received almost 2,000 signatures in only six days! However, we’re not even close to closing the petition! With your continued sharing with family and friends, we’re confident that we can reach thousands and thousands of signatures to bring to Congress supporting H.R. 460, The Patients Access to Treatments Act. This petition is for everyone to sign, not just members of the PI community, so we hope that you’ll spread it around!

      Take a few moments to hear the story of Carolyn Chicoine, an IDF volunteer, in this IDF Advocacy Channel Video. She talks about her experiences and challenges with access to the crucial medical treatments necessary for her to live a healthy life. Carolyn is only one of 250,000 individuals diagnosed with PI in the U.S. We still need your help to make sure all patients with PI have access to vital treatments!

      IDF is grateful for your continued support and ongoing promoting of this petition, thus far. We’ve made great progress, now let’s keep the momentum going!

      http://www.youtube.com/watch?v=9dRFMmFbLkw

      Carolyn supports the Patients' Access to Treatments Act

      Carolyn details her struggles with coinsurance for her lifesaving immunoglobulin therapy, which amount to thousands of dollars in out of pocket costs per month. HR 460, the Patients' Access to Treatments Act, would help limit out of pocket costs for patients who need expensive, specialty drugs.

    8. Reached 1,500 signatures

    Supporters

    Reasons for signing

    • Kim Conrad LAKE WORTH, FL
      • 4 days ago

      My son is 12 yrs old and has Cvid

      He has taken plasma (Hizentra) and because of deductibles and stress of the disease I found it easier and less stressful to take out a credit card loan and get a high deductible policy for the whole family . But for 12 yr it still leaves us with out any savings or vacations .we have spent well over $100,000.00 dollars for his care and plasma treatments and the Hsa the govt offers don't let us even write any of it off. $8000.00 every January in six weeks we meet this out of pocket and we spend all year long trying to pay it off, " with interest" . Who knows how we will continue this ! God only knows?

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    • Tamra Skahan HOSCHTON, GA
      • 6 days ago

      In 2005 my family was forced into "medical" bankruptcy due to my insurance company withdrawing their pre-approval for 14 mos. of IgG Infusion therapy. NO family should ever have to endure the catastrophic impact of medically necessary treatment on finances. I went 6 years without IgG because ERISA loopholes make it possible for the same thing to happen again, and I have NO recourse. That time off therapy nearly killed me and decimated my autoimmune system to the extent that, even with IgG infusion therapy, it cannot recover. This should NOT happen in one of the richest countries in the world.

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    • Shirley Vulpe PALM SPRINGS, CA
      • 10 days ago

      I have CVID, AS a partt of a community of patients whose treatment is extremely expensive this process of paying fr treatment is a death sentence on those without means to pay.

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    • Lisa Kennedy SIMPSONVILLE, SC
      • 11 days ago

      My daughter has a]Adhesive Arachnoiditis

      REPORT THIS COMMENT:
    • Elizabeth Dunford BROOKLINE, MA
      • 15 days ago

      My high school friend needs this bill to be passed as she suffers from auto immune deficiences

      REPORT THIS COMMENT:

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