The following is a call-to-action sent out by NORD - the National Organization for Rare Disorders. This is a big issue for many in the HPS/CHS community. Many HPS'ers have large medical bills over the course of years and years. Most insurance offers up to a millon worth of medical coverage. That might sound like a lot, but trust me, with the cost of health care today, it isn't hard to meet that cap. If, for example, you need a lung transplant the surgery alone runs about $300,000. That doesn't include pre-op workup and care or post-op anti rejection drugs.
Many HPS'ers require expensive medications such as Remicade at $10,000 an injection every six to eight weeks. Couple that with other complications as life goes on, and once again, the bills start adding up fast.
If you feel so moved, please call your Congressional representative and ask them to sign onto this letter to abolish insurance coverage caps sooner rather than later.
Here's the info:
Please share the following with your members:
As you read this, key Congressional leaders are behind closed doors determining what YOUR healthcare options will look like next year.
The time to act is now, by joining NORD and its Member Organizations in the following:
· Call the switchboard of the U.S. Congress at (202) 224-3121 and ask for your Representative’s office.
· Ask your Member of Congress to call Rep. Patrick Kennedy’s (D-RI) office to sign on to his letter to abolish lifetime caps.
· If you live in North Dakota and have been affected by lifetime insurance caps, please share your story with Senator Byron Dorgan (D-ND). Sen. Dorgan may also ask the Senate to abolish lifetime caps and will need these stories to explain the issue to his colleagues.
You can use the following phone script in your call to your legislator.
And…remember…the ultimate authority of the U.S. Congress to act resides in YOU! Together, we can make a difference!
PHONE SCRIPT:
Good morning/afternoon. My name is _____________________ and I am a constituent living in (city, state). I have a rare disease.
I am calling to bring to your attention a letter that Rep. Patrick Kennedy is circulating in Congress. This letter calls for the immediate abolition of lifetime insurance caps in the House health care reform bill, HR 3200.
As this bill is currently written, patients may have to wait up to nine years after reform is enacted to see those lifetime caps eliminated. People like me who have rare diseases face possible financial ruin if lifetime insurance caps are not immediately abolished. This issue is very important to me.
Will Representative (insert name of your Representative) sign on to Patrick Kennedy’s letter?
Many HPS'ers require expensive medications such as Remicade at $10,000 an injection every six to eight weeks. Couple that with other complications as life goes on, and once again, the bills start adding up fast.
If you feel so moved, please call your Congressional representative and ask them to sign onto this letter to abolish insurance coverage caps sooner rather than later.
Here's the info:
Please share the following with your members:
As you read this, key Congressional leaders are behind closed doors determining what YOUR healthcare options will look like next year.
The time to act is now, by joining NORD and its Member Organizations in the following:
· Call the switchboard of the U.S. Congress at (202) 224-3121 and ask for your Representative’s office.
· Ask your Member of Congress to call Rep. Patrick Kennedy’s (D-RI) office to sign on to his letter to abolish lifetime caps.
· If you live in North Dakota and have been affected by lifetime insurance caps, please share your story with Senator Byron Dorgan (D-ND). Sen. Dorgan may also ask the Senate to abolish lifetime caps and will need these stories to explain the issue to his colleagues.
You can use the following phone script in your call to your legislator.
And…remember…the ultimate authority of the U.S. Congress to act resides in YOU! Together, we can make a difference!
PHONE SCRIPT:
Good morning/afternoon. My name is _____________________ and I am a constituent living in (city, state). I have a rare disease.
I am calling to bring to your attention a letter that Rep. Patrick Kennedy is circulating in Congress. This letter calls for the immediate abolition of lifetime insurance caps in the House health care reform bill, HR 3200.
As this bill is currently written, patients may have to wait up to nine years after reform is enacted to see those lifetime caps eliminated. People like me who have rare diseases face possible financial ruin if lifetime insurance caps are not immediately abolished. This issue is very important to me.
Will Representative (insert name of your Representative) sign on to Patrick Kennedy’s letter?
Comments