Just another WordPress.com site

Posts tagged ‘Food and Drug Administration’

Want to write your Congressman on Paul’s behalf? HERE’S HOW!

FROM OUR VERY GOOD FRIEND RALPH GOONAN! WANT TO WRITE A LETTER ON PAULS BEHALF? HERE’S HOW!!

I sent this letter yesterday to Blake Farenthold and forwarded it to several friends in my network for them to send to their own representatives. In case you need a pre-written letter to pass on to your friends, feel free to use this one. Let them know they can look up the contact info for their own representatives at http://www.house.gov/representatives/find/ ——–

July 17, 2012 The Honorable Blake Farenthold

2110 Rayburn House Office Building

United States House of Representatives

Washington, DC 20515

Dear Representative Farenthold,

I understand that members of Congress rarely receive constituent letters that express anything other than a complaint. I wish this letter were different. Please know that I certainly sympathize with how you must constantly listen to gripes and complaints from the citizens you represent. I thank you for your time and attention.

My good friend Paul Klemm of Portland, Texas, is a 10-year Navy veteran. His time of service included operations Desert Shield and Desert Storm. He served his country with honor and distinction. A native of Ohio, his Navy service took him around the world and ended with an assignment to Naval Station Ingleside. He remained in the area after his service, working as a financial expert, real estate agent, and as an amateur and semi-professional musician.

In 2011 he was diagnosed with ampullary cancer, a rare form of cancer whose victims are usually in their 70s (Paul is in his mid-40s). With the economic downturn forcing him out of the real estate business, his insurance with Veterans Affairs was his only coverage. The VA covered his initial treatments and surgeries, but eventually all treatment regimens approved by the Food and Drug Administration were exhausted with no improvement. Clinical trials are now his only hope for survival.

MD Anderson Cancer Center in Houston is willing to consult with Mr. Klemm and likely take him on as a patient. However, the VA is refusing to cover non-FDA-approved treatments. MD Anderson is now requiring Mr. Klemm to pay for any consultation and ensuing treatments up front, out of his own pocket. According to his most recent correspondence with MD Anderson, the consultation alone would cost over $14,000. The treatment cost will likely dwarf that amount.

It is appalling that a veteran like Mr. Klemm who served with such distinction would be denied VA coverage for treatments that may very well save his life. On the medical front, there is still hope. There may be several clinical trials being conducted at MD Anderson that could prove successful. Money seems to be the only barrier to finding out for sure. And it appears it’s not even an issue of money — rather, it’s an arbitrary rule that prevents the VA from covering the cost of treatment plans that have not been approved by the FDA. This is a rule put in place by Congressional decree. And if Congress has put this rule in place, it can remove it — or at least provide a way to prevent such rules from needlessly obstructing access to life-saving treatments.

Please take notice of Paul Klemm’s predicament. He maintains a blog detailing his experiences. One entry in particular sums up his current situation nicely. He has also made a YouTube video detailing his difficulties. The links are: Blog entry: https://littledogdiaries.wordpress.com/2012/07/12/what-now/ YouTube video: https://www.youtube.com/watch?v=vEfwlea7TAk&feature=player_embedded

No doubt you are aware that the VA has had difficulties providing the coverage and care that our honored veterans have earned for serving the United States. This is one case where bureaucratic difficulties can mean the difference between life and death.

Thank you for your service in Congress, and thank you for your time and attention in this matter.

Sincerely,

  • www.house.gov

    Not sure of your congressional district or who your member is? This service will assist you by matching your ZIP code to your congressional district, with links to your member’s website and contact page
Advertisements

Roadblocks SUCK!

I knew it just seemed toooo easy……I called MD Anderson today and they made out like all I needed was a Referral and Authorization from the VA for Paul to get treatment…..I thought, “well, that was easy..” I have done that several times in the last year and a half….getting “vouchers” for his treatment….it’s a pain in the butt but not impossible to get….

however…..

I returned home to find that the VA contacted Paul and informed him they don’t cover “Experimental, non-FDA approved” treatment.

That was certainly something we didn’t expect. And the news hit him pretty hard…..

Again, we have exhausted the typical FDA approved protocol for his type of cancer.

Now I was a little taken back at the news….shed some tears….but it didn’t last long. I started sorting things out in my mind….

#1- fact is, the VA hasn’t wanted much to do with this from day 1 and it’s been  nothing but push and shove with them anyway….what’s ONE MORE THING?!? Seriously…this is me we are talking about here. If anyone knows how to make a stink in the VA system it’s me. Having spent our entire careers in sales we don’t accept “NO” very easily. We are beyond tenacious.  They didn’t call me “The Bulldog” for nothing….cause I just  won’t let go…..and I sure won’t let go here.

#2- We still have my insurance kicking in in about 6 weeks. The gal at the VA did tell Paul even if the VA DOES decide to cover it (and this gal made it very clear she would fight for us!) it would still take some time to get it approved. Because this request really has to go far up the chain of command. In the meantime, we are getting closer and closer to my insurance becoming valid….of course, I don’t know if MINE would cover it either. And that’s something I am going to check out tomorrow.

#3- There HAS to be some sort of drug company sponsored  grants available to pay expenses for patients willing to submit to drug trials. You can’t tell me we are the first POOR PEOPLE who have walked in the door saying “Please help us”. There has to be grants and funds available, ESPECIALLY for a young, otherwise healthy, willing to do ANYTHING ampullary cancer patient. He is a rare bird walking into the Research Center and I am confident someone is going to want to sign him up.

#4- if all else fails I will be standing in front of anyone who will put a microphone in my face so I can tell them the story on how the VA is going to allow a 45-year-old father of 2 die because of bullshit VA red tape. No one wants to see that, especially in an election year. I can make a LOT of noise people….we will not go away quietly. I don’t relish the idea but we will do what we have to do. And we know people who know people and we could quickly make this a potential national news story.

So what can you do? Right now, just PRAY. Pray for our strength and guidance while we navigate these stormy seas. Pray that God will intervene and show us the path we are supposed to take. Pray that the right people are put in our path so we may have assistance getting him to the people who are going to save his life. Pray that we remain strong in our faith. If you aren’t a praying person we ask for your good thoughts and well wishes. This is going to be a tough fight, made even tougher but with our God and our family and friends behind us we will persevere!!

–L

Tag Cloud