ACOR Responses To The N.I.C.E Decision

From Kidney Cancer Resource

Contents 1 Overview 2 Responses 2.1 Response 1 2.2 Response 2 2.3 Response 3 2.4 Response 4 2.5 Response 5 2.6 Response 6 2.7 Response 7 2.8 Response 8 2.9 Response 9 2.10 Response 10 2.11 Response 11 2.12 Response 12 2.13 Response 13 2.14 Response 14 from Michael Rawlins to an ACOR member 3 References 4 Disclaimer 5 E&OE - Errors & Omissions Excepted

Overview

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We asked if fellow Kidney Cancer patients and carers from the ACOR mailing list would help us in our battle with NICE to approve the much needed Kidney Cancer drugs.

Below are just a few of the responses we received

Responses

Response 1

This is a call to arms, for lack of a better term. The recent decision by the powers that be in the UK to stop Sutent, Nexavar, et al will have devastating effect on those who are currently fighting RCC as well as future RCC patients.

So, with that in mind I am sending out the email address to you brave folks on this list with the hope that we will unite and flood the N.I.C.E demanding they reconsider their decision.

Warriors and Caregivers alike should write them asap to let them know we are against stopping the meds. Here is the email address directly from the web site: nice@nice.org.uk

If we do it in the next few days, they may get the idea. Thank you all.

Response 2

Here is a copy of the email I sent to NICE

I write to you as an RCC patient in the USA that has been on Sutent now for 9 months with significant shrinkage to my lung "mets" as a result of the drug. I understand the difficulty of the decision that you face but wish to encourage you to allow Sutent for my fellow RCC patients in England. I personally know of several other RCC patients at my Cancer Center at the University of Wisconsin that have been on Sutent for over 2 years and are stable with no growth or new tumors,

Since my nephrectomy in Feb of 2006 I watched my son marry a beautiful young lady, I walked my daughter down the aisle to wed a great young man, I celebrated my 60th birthday, I celebrated my 37th and 38th wedding anniversary with the greatest lady in the world, I was handed my first granddaughter and now watch her take her first steps, last week I was handed my first grandson and was told that he was named after me. Amazing what can happen in 2 1/2 years. PLEASE DO NOT DENY THAT TIME TO MY FRIENDS IN THE UK THAT SHARE MY DISEASE. TWO YEARS CAN BE PRICELESS!

Sincerely John Swendrowski Wisconsin , USA

Response 3

Sutent has stopped my wife’s Renal Cell Carcinoma in it’s tracks after only three months. It had been growing rapidly now two of her lung nodules have shrunk 33 and 50% each. The other mets areas are stable. She has no new growths and I talked to a man today in Australia who has been on Sutent for five years and in free of Cancer. It may not cure the RCC but it definitely works and buys us enough time until a cure comes out. Everolimus will be avail in about five months. Without Sutent I don’t believe my wife would be alive today. It is vital to her treatment and is a viable option for any RCC victim.

Response 4

I know a number of people in my kidney cancer support group who have taken Sutent for over 24 months, having participated in clinical trials early on. Each of them owes their lives-lived well and productively–due to the efficacy of sutent. The NICE should understand better than the average citizen that the statistics are not exactly reflective of the response that the more typical patient receives. Don’t let the UK become the pariah of the medical world due to this willful refusal to see the reality of the cures.

Response 5

I will email them this morning and ask my 20 staff to as well!

Response 6

I sent my email off to NICE as well. Isn't that what this is all about anyway? Helping each other?

Response 7

OK, I sent mine....

Response 8

I have sent my email supporting the availability of RCC drugs for patients in GB.

I hope they come to their senses.

Response 9

I implore you to act with human decency towards renal cell carcinoma patients in the UK. The drug Sutent has kept my husband alive (and well) for the last two years. Without it, he would be dead today.

Human life has no price tag. By cutting off these valuable, life-saving treatments to your citizens, you are, in effect, hastening their demise. Cancer patients are not cast-away people to just be left to die. They have much to contribute to our society, to their families, and to our world.

Please allow your citizens the basic right to life.

Response 10

Sent my email off too in support of allowing UK citizens to have access to the rcc drugs they need.

Response 11

I did go back an resubmit the comments for everyone (about 20 people thus far) using both pages and got a confirm from NICE. Hope it helps.

Laura Sourasis

Response 12

Being a UK citizen I find it very alarming that your organisation has decided not to fund Kidney Cancer drugs. I question your logic and can only think that your organisation trying to set a price policy with the pharmaceutical companies and pushing for a 25% discount to get within your cost benefit targets.... I suspect such negotiations are ongoing but in the meantime some 3,000 UK kidney cancer patients that rely on the NHS may be paying with their lives and loss of all hope.

I know of a number of people that have no evidence of disease (NED) after completing Sutent or Nexavar cycles.

Please reconsider your position and allow all sufferers of all diseases the best chance to beat their disease.

Response 13

By not allowing people with kidney cancer access to the appropriate drugs, you are in effect murdering them. Here is the U.S. we treat our citizens with the respect they deserve. It is unbelievable to think that the powers to be in the UK and pulling the plug on people. Please allow access to these drugs. They are allowing people to live until a cure can be found. Some people live on these drugs for years. We do need to push for reduced prices from the drug manufacturers, I agree with that. But, under no circumstances should people be cut off from the drugs they need to keep them alive.

Response 14 from Michael Rawlins to an ACOR member

Thank you for writing. I appreciate it.

I am glad that your sister has had such a good response. As a physician, myself, with 40+ years of experience behind me I can understand her predicament.

I should explain that the Institute has yet to reach a position on the availability of these drugs. The problem our advisory committee faces, though, iis the fact that if we ultimately decide in favour of them, other people will be denied cost effective care.

In the UK we have a finite amount of money to spend on health; and if we say "yes" to one group so that they can recieve VERY expensive treatments others, no less deserving, will be denied cost effective care.

Once again thank you for writing. You may be surprised to learn that NICE is not the hard hearted outfit painted by the media. We do care!!!! But we have to look after everyone in the UK who's healthcare depends on the NHS.

Best wishes

Michael Rawlins

References

Disclaimer

E&OE - Errors & Omissions Excepted