9.20.16

U.S. consumers and patients with all types of chronic conditions are contacting the Centers for Medicare and Medicaid Service (CMS) to say they support chronic disease patients’ access to charitable assistance programs. Comments are due to CMS this week – on September 22.

Following are 10 examples of what concerned citizens are saying.

1. From an individual with chronic myeloid leukemia in Alaska:

    “Eight years ago I was diagnosed with chronic myeloid leukemia – CML. Had it been ten years earlier I would be dead now, but a miracle drug was available. Without the assistance of PSI in paying for it, I would not be alive today, as I literally would not live without it.”

2. From a family dealing with hemophilia in Virginia:

    “To those concerned about my family’s well being:

    “I am writing today to urge CMS to protect vital patient assistance programs by ensuring nonprofit organizations, such as Patient Services, Inc., are included on the list of approved entities that can provide third-party premium assistance under the Affordable Care Act.

    “The generous assistance that PSI has provided to our family has enabled us to live a better life. I have four sons with hemophilia; one of the most expensive diseases in America. Over the years, the medical costs have been prohibitive and the new ACA regulations have made them more so. PSI has assisted us by paying our premiums. This has allowed us to be able to make payments on the rising deductibles and co-pays.”

3. From someone struggling to afford medications in Pennsylvania:

    “I have been diagnosed with alpha 1 anti trypstan deficiency and am completely dependent on third party, non- profit assistance to help me with my medications. To lose this by backdoor denials due to pre-existing conditions would be devastating to my family. Please help me.”

4. From a man in South Dakota:

    “I depend on assistance to purchase my life-saving medication. Without the assistance I would not be able to afford the medication. I take a daily chemo-pill to keep CML under control.”

5. From a diabetes and rheumatoid arthritis patient in Oregon:

    “I am a diabetes and rheumatoid arthritis patient in Oregon. From time to time I have had to use charitable assistance to offset expensive treatment options. Prices for both pharmaceuticals and office treatment continue to sky rocket. I’m worried that your memo that limits or prohibits my ability to use charitable help if/when needed puts my health outcomes at risk. Family and churches are great from time to time, but they cannot be sustained. People like me need the option of non-profit charitable groups which are consultant and can be relied upon for longer time periods.”

6. From a family needing help in Florida:

    “This matter is so critical to us. My husbands Gleevec costs over $10,000.00 a month. Can you even fathom that? WHO CAN AFFORD $10,000 A MONTH? This is a lifesaving drug & we should not have to be wealthy to be entitled to the same level of healthcare afforded only a certain segment of society. PSI has literally been a lifesaver to us.”

7. From a concerned wife in Nebraska:

    “My husband was diagnosed with HUS atypical 2 years ago. It is a life threatening illness of the blood and is very expensive to treat. Thank goodness there is a program like PSI to help out with our out of pocket expenses and our co-pay on our insurance. It is wonderful to not worry if we can afford the treatment and the travel expenses.”

8. From an individual in Texas:

    “The extremely high cost of medications in America IS KILLING US. Please let the organizations that help Americans like me obtain our meds, continue to provide their fantastic services without obstruction from this bill in question.”

9. From a caretaker in Ohio:

    “I think individuals should be able to participate in these types of programs, to be able to get the medications they need. I’m my mother’s full-time caregiver and unable to work, so we are getting by only on her income. If these programs are not going to be available to the individuals who need help, then there are going to be a lot of elderly more sick because of not being able to get their medications.”

10. From a man with cancer in Alabama:

    “My age is 75 and I live on SS Income of $1995 per month. The medicine I am taking is a cancer drug named Gleevec that costs $11,000 per month retail. If it were not for PSI I could not afford it at all. Please do not do anything to prevent PSI from helping me pay for the drug. It is keeping my cancer in remission. If I have to stop taking it the GIST cancer will recur and I will die.”

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