Ask Your Senator to Extend Immunosuppressive Drug Coverage

[Zach]

From the National Kidney Foundation:
                                                       Ask Your Senator to Extend Immunosuppressive Drug Coverage
Senators Richard Durbin (D-IL) and Thad Cochran (R-MS) introduced S. 2320, on November 7, 2007 to extend Medicare coverage for immunosuppressive drugs for the life of a kidney transplant. Patients would continue to receive these drugs under Part B of Medicare with the usual premium. This is a big step forward to preserve the life of kidney transplants.

People with organ transplants must take immunosuppressive drugs for the life of the transplant to reduce the likelihood of the body rejecting the organ. Currently, Medicare pays for many kidney transplants and covers drugs for 36 months after the transplant as part of the Medicare ESRD benefit. At the end of this time, kidney recipients must pay for immunosuppressive drugs through private insurance, public or pharmaceutical programs or pay out-of-pocket (if a kidney recipient has Medicare ages or disability status the drugs are covered without a time limit). Although immunosuppressive drugs are expensive, if the kidney transplant fails, the person returns to dialysis at a cost of over $67,000 per year to Medicare.

Congressmen Dave Camp (R-MI) and Ron Kind (D-WI) introduced H.R. 3282 the same bill in the House of Representatives, and Take Action volunteers sent over 1100 letters of support in August and September. Now we need your help to build Senate support for this important legislation.

Please take a moment to write your Senators today and ask them to co-sponsor S. 2320. Share your story, or the story of a loved one, about the experience with immunosuppressive drug coverage. Thank you!

To take action:
http://capwiz.com/kidney/issues/alert/?alertid=10540921&queueid=

EDITED: Corrected Bill Number - okarol/moderator

[glitter]

thanks for this -will do!

[paris]

Just finished mine. Only took a minute.  And I sent it on to everyone in my address book. Thanks Zach for giving us this link.

[Beth36]

Thank you so much for posting this!  My parents are in MS and I will let my congressman here in VA know as well....I'm getting my e-mail list togethe to spread the word! 


Beth

[livecam]

Thank you Zacho.

[stauffenberg]

Talk about being penny-wise and pound-foolish: the Congress saves about $20,000 a year by not paying for immunosuppressive drugs for patients past 36 months post-transplant, thus causing the patients to have to return to dialysis, which costs the government now $67,000 a year!  When you add to this the loss of productive labor, the loss of the tax revenues healthy patients pay to the government, plus the cost to the state of all the co-morbidities of dialysis which have to be paid for, the government makes a very foolish decision, even if you discount these losses by the number of patients who can afford to carry the costs of their immunosuppressive drugs privately or through private insurance.

[Zach]

Interesting how those "Caring Kidney" Partners (lobbyists) are nowhere to be found in support of this legislation.

 

[kellyt]

I printed my Senator's info.

However, can someone who is also going to write their Senator please post their letter as a "sample"?  I would greatly appreciate it!  I've never written my Senator or Congressman/woman and I want to sound like I know what I'm talking about.

I mean, once I "tell my story" I'm stuck.  Thanks in advance!   

[okarol]

I think starting out telling your story, keep it simple but tell how the bill will affect you.
After that you can say something like: I hope I can count on your support for the bill S. 2320. This legislation would extend Medicare coverage for the essential immunosuppressive drugs for the life of a kidney transplant. Patients would continue to receive these medications under Part B of Medicare with the usual premium. This would prevent a lapse in coverage and will help to preserve the life of kidney transplants.

[paris]

I think between Beth and I, we sent this to over a hundred people.  We have gotten replies from many saying that they had no idea that the drugs were only covered for 3 years. And all of those people have sent it on to everyone in their address book. 

Thanks, Zach

[kellyt]

Thank you Okarol.  That helps!

[Zach]

This information from the American Association of Kidney patients (AAKP) might be of help:

Contact Your Members of Congress
Patients have both the right and responsibility to make their voices heard in Congress and elsewhere in government. Below we have provided a short sample letter that you can send to your two Senators and to your Congressman to let them know kidney disease and Federal programs for kidney patients are important to you. You may also customize this letter with personal information and your experiences.

Constituent concerns are most important to members of Congress-- and this letter lets your members of Congress know what is important to you! The letter is also a great way to gain some experience in contacting Congress. You should receive at least a short acknowledgement letter from your Senators and Congressman.

AAKP would appreciate a copy of any letter you send to Congress. Please email your letters to info@aakp.org.

Dear [Senator or Congressman]:

I am writing to let you know that, as one of your constituents, I am a person with kidney disease. I live in [name town], and receive dialysis treatments three times per week. You should know that the programs of the Federal government, such as Medicare, that serve kidney patients are very important to me-actually are saving my life! I hope that when legislation affecting kidney patients comes before Congress, you will keep me in mind. Of course, if I could be helpful in providing you with more information about kidney disease, please let me know.

Sincerely,

[Your Name]

For more information:
http://www.aakp.org/public-policy/contact-your-members-of-congress/

 

[2_DallasCowboys]

Thanks, Zach, for posting this.
I have sent in mine, and will forward this
on to all my friends.

Anne

[boxman55]

I e-mailed both Senators Kohl and Feingold here in Wisconsin to support this bill. It was easy to do all I did was google the Senators names and the sites came right up to e-mail them. Get on it right away everyone...Boxman

[thegrammalady]

sent mine off today and asked my sister in oregon to send too.

[bolta72]

Signed, Sealed, and on its way

[kimcanada]

Its funny that I am reading this now, because I had a meeting with my "new" coordinator on Thursday, and finally had the guts to ask the question I have been scared to death to ask... how much my drugs will cost after my transplant, and much to my happiness I was told it was covered but the provincial government. 

I send my prayers to anyone that doesn't have this covered, I can't even imagine what I would have done with no medical coverage.

Kim

[Zach]

 

[Zach]

There's still time before the holiday to write your Senators.
 

[kellyt]

Be sure to put  S. 2320 and not S. 2330, as  noted in Zach's original post.  He may have made the correction somewhere down the board.

I had a bit of confusion with that and had to send my letter and apologies to friends and family twice!    I originally put S. 2320, then went back and saw S. 2330, made the correction sent another email with corrected letter, then found the actual bill on the internet and saw it WAS
S. 2320!   Hence the 3rd email!   aaarrggh!!!       I just blamed it on the toxins!   

[kellyt]

If anyone would like to read the bill - here it is.

   http://www.govtrack.us/congress/billtext.xpd?bill=s110-2320

[okarol]

I wrote to my senators and also emailed friends and family. Many people were surprised to learn that there is no assistance for anti-rejection meds if you are not disabled or over 65. In a perfect world all transplant patients would be fully employed and able to qualify for their employers group insurance plan, but unfortunately this isn't always possible. In addition, if there's ever a lapse in insurance the person may be without coverage for a period of time, making it impossible to afford these drugs on their own. Many people I wrote to said they will or have sent a letter to Senate. I hope it helps.

[okarol]

My sister just emailed me with a copy of the letter she sent to everyone she knows:

Legislation regarding Extension of Immunosuppressive Drug Coverage

As many of you know, this issue affects me personally. My niece,
Jenna, is a live donor transplant recipient. Her kidney transplant
took place on January 16, 2007. She is now 22 years old and does
not have private medical insurance. She had been too ill to continue
her college education or seek full time employment. Because she is
not a full time student, my sister cannot cover her under their
family medical plan. This legislation is vital to her survival
past the 36 month coverage period for her anti rejection drugs.

It's hard to believe that nearly a year has passed since her
transplant. We count our blessings every time we look at what a
vibrant young woman she has become in such a short period of time.
We have fear of the future however, as finding funds for her needed
drugs will be a monumental undertaking and there are only 2 years left to come
up with a financial solution. I simply cannot bear the thought of her having
to go back to the horrible reality that is dialysis. It sustains life but only
just that. If you have an interest in knowing more, please feel free to follow
her difficult journey (and the same of many, many others) at her website:

http://www.caringbridge.org/visit/jennafranks/

Please contact your representatives. Not only does this legislation make sound
financial sense, it also may make the difference between a normal life and the
dependence on dialysis to merely stay alive for so many transplant
recipients.

From the heart, my family thanks you for your concern.

Lori
------------
I just took action on this issue and thought you might find it interesting
too.

Click on this URL to take action now
http://capwiz.com/kidney/utr/2/?a=10540921&i=85787917&c=

If your email program does not recognize the URL as a link,
copy the entire URL and paste it into your Web browser.


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[Zach]

Once again I will note that the "Caring Kidney" lobby has not promoted this legislation.  Could it be that they only care about people with kidney failure when it makes them money?
 

[okarol]

Just received this today:

-------------------
Hi Karol,
 
My name is Kelly and I've been keeping up with Jenna's story for some time now.  I'm so glad to hear that things are going so well for her and your family.  The reason I'm emailing you today is, I signed Jenna's guestbook letting you know that I sent an email to our senators here in Louisiana.  And of course I figured that would be the end of that.  However today I received this email from Senator David Vitter and thought I would share it with you.  Wishing you and your family many happy and healthy years together.
 
Warm Wishes,
Kelly
---------------------
 
Dear Mrs. *last name removed*,
           Thank you for contacting me in support of the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act. I appreciate hearing your thoughts on this important issue.
           As you may know, this legislation would continue Medicare coverage for immunosuppressive drugs for beneficiaries who received a kidney transplant, and would allow Medicare patients with End Stage Renal Disease (ESRD) to continue receiving drug coverage by extending Medicare secondary payer requirements beyond 36 months. This bill would also mandate that group health plans provide coverage for immunosuppressive drugs for enrollees who have received a kidney transplant.
           Like you, I am concerned about the ability of kidney patients to have access to the essential care that they need. You may be pleased to know that I supported the Medicare Renal Dialysis Payment Fairness Act that would have updated Medicare coverage for renal dialysis. Rest assured that I will monitor the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act in the U.S. Senate and will keep your concerns in mind.
           Once again, thank you for contacting me about this important issue. Please do not hesitate to contact me in the future about other issues important to you and your family.
Sincerely,


Senator David Vitter
United States Senator
 
P.S. Please visit my webiste to sign up for E-Updates and receive regular email updates from me on the issues important to Louisiana families.
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