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Want to write the Ellen Show?

http://ellen.warnerbros.com/show/respond/?PlugID=10

Sign a PETITION?

http://www.change.org/petitions/va-health-administration-approve-for-paul-klemm-to-receive-clinical-trial-meds-for-his-cancer

Share Paul’s YouTube Video?

http://www.youtube.com/watch?v=vEfwlea7TAk&feature=share

Visit our local Congressmans Facebook Page and write a recommendation?

http://www.facebook.com/#!/BlakeFarenthold

Contact our local news station?

http://www.kristv.com/contact-us/

Write our local news paper?

e-mail them at webmaster@caller.com

Contact Fox News with a news tip?

e-mail them at  foxnewstips@foxnews.com

Need pictures to share so they can see an otherwise STRONG and HEALTHY 45 year old man being sent home to DIE by the VA? Use this one!

   Want them to see he is the FATHER of 2 beautiful children? Rachel (18) and Daniel (14). Let’s not forget Rachel lost her biological mother to cancer when she was 9 years old. Saving her fathers life is IMPERITIVE!! She should NOT be left without her father simply because we can’t afford the bill!! The VA needs to take care of this VETERAN and his FAMILY!

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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

A Plea for Help!!

This is a link to the video that I uploaded to Youtube the other day.  I will continue to load more videos updating everyone on what is happening.  I promise to keep them shorter from here on!

My thanks to everyone!!

Paul

Well, I spoke to someone from the Clinical Trials Department at MD Anderson and they are very happy to meet with us for a consultation….as long as we bring a check with us for $14,500 to pay for it….yes, you heard me right…14 THOUSAND 5 HUNDRED DOLLAR$!! And that’s ONLY for the consultation. If accepted into a study we will have to pay for all services up front since the VA won’t cover clinical trials. She said Medicare/Medicaid may pay for “standards of care” which include labs, basic x-rays (NOT CT scans or pet scans or any of the medications) so that would save us about $15,000 per cycle but the rest we have to pay ourselves. So if someone has an extra $250,000 laying around we might actually get to save my husbands life. Oh yea, no financial aid and no payments plans….payment in FULL upfront.
The bottom line to all this is we need to strong arm the VA into paying for this. It’s OBSCENE that they are sending an otherwise perfectly healthy 45 year old father of 2 home to die because they refuse to pay for clinical trials. Sorry sir, we know you served your country for 10 years of your life but hey, we did the 2 treatments that are FDA approved and they didn’t work so sorry, you are done….
We need anyone and EVERYONE with any connections to the news media, within the VA system or with MD Anderson to make some calls and write some letters. Even if you have no connections, write your local congressman, senator or VA representative! Write Oprah or Ellen or SOMEONE! I can’t even believe this is happening all because of $$MONEY$$!!!

What now?

For the first time though this journey I really feel helpless. I will admit, this is a particularly tough week. Lisa and I have been spending each evening packing. This is the week that we surrender our home back to the bank.

 We were fortunate to find a home here in Portland that we can rent (substantially cheaper than the mortgage on this place). It’s not ideal, but we didn’t expect it to be. It will work though. Most importantly, if something happens to me, and I can no longer work, Lisa can afford (just barely) to keep the place.

My ability to continue working in the future is really part of what is bothering me. I’ve posted about this in the past, but realized after it was too late, that I posted this blog on the wrong page. So let me bring everyone up to speed. If you’ve heard this before, I apologize for repeating it.

On June 4th I went in for my normal chemo treatment. I had just had a PET Scan a few days prior, so I knew I was meeting with the doctor to review those results. The news was not what we wanted to hear. In fact, what he told us was that the current treatments were not working. During the previous 6 weeks that I was on this new regimen my cancer had spread as if I were receiving no treatment at all.

My first reaction was to say, “OK, then what are we going to try this time?” He just shook his head and said, there are no other treatments for Pancreatic cancer. Apparently, with this it’s just 2 strikes and you’re out. He went on to tell Lisa and I that my only hope was to find a clinical study that might include a drug that could help me.

By this time Lisa was sobbing openly. I was still numb and dumbfounded that anyone could tell me that there are no other options. Lisa asked that question that we really didn’t want to know: Without finding a successful solution, how much longer do I have to live? Dr. Mahmood hedged on this quite a bit. Obviously he can’t look into a crystal ball anymore than I can. “Typically” he said, “with this type of cancer, patients will last 8 – 10 months without treatment.” He did go on to reiterate that I am not the typical patient. I am MUCH younger (30 years) and healthier than the typical patient. It is clear though that the prognosis is bleak.

We talked about options for treatments. MD Anderson has never accepted my insurance in the past. The just don’t see eye to eye with the VA. So I asked about the possibility of going back to The Cancer Treatments and Research Center (CTRC) in San Antonio. This is the Cancer Center that did my original surgery. I also started my chemo here. Being a research facility, and one of the best in Texas, I thought we’d have a decent chance here.

The Doctor’s office set up an appointment for us to meet with Dr. Lu. I had met Dr. Lu in the past and really liked him, so I really encouraged. I felt like this was a new beginning for us.

The day came for us to go to CTRC. When we got there I couldn’t help but feel as if Dr. Lu was completely caught off guard by us. We talked for quite a while and he was brought up to speed on my history since I had last been at CTRC. At that point he excused himself saying he was going to go to the research office to see what studies I might be eligible for.

I have no idea how long he was gone. It felt like hours to me. I kept falling asleep while we waited for him. Finally he came back in with two phase one studies in his hand. Now I am exaggerating when I say this, but to me, it felt like he walked in threw the paperwork down on the table and said here you go, here are two for you to choose from. That’s not the way I want this to work! I want to see some enthusiasm! I want him to walk in and say, I think this is the answer for you! Instead I get, “maybe you could try this one…”

I have read through paperwork on clinical studies before. I am not a novice at this anymore. I read through the study her recommended. It was for a drug typically used for patients with prostate cancer. The study was pretty much open to anyone with advanced cancer that had exhausted all FDA approved studies. In other words, as I read it, your chances of survival are minimal anyway so let’s see what happens when we give you this drug!

Lisa and I walked away from CTRC feeling completely let down. I had so much hope that the answer was going to be there. They had all been so wonderful in the past. In retrospect, I think they were just in over their heads.

In my mind, that really just leaves one more option. I have to get into MD Anderson. They are not only the best Cancer center in Texas, but one of (if not THE) best in the world. Now, as I’ve said in the past, they are not happy about anyone from the VA coming to their facility. The VA, you see, has a terrible reputation about paying it’s bills. However, when we called and spoke to the business office they were very receptive.

Somewhere in the middle of all this, I received a call from the VA. It was a very nice lady in the Harlingen (Texas) office. Her office is the one that approves the vouchers for Veterans to receive care outside of the VA system. She informed me that while the VA had no problem with me going to MD Anderson, and they were more than willing to pay for the treatments, it appeared that I had already exhausted all conventional treatments, and the VA does not pay for non-FDA approved treatments.

The VA finally agreed to send me to MD Anderson for a couple of visits so that they could come up with a treatment plan. Once they came up with that plan then the VA would evaluate their ability to pay for it. MD Anderson said, “We’re not going to waste everyone’s time with that!”

All this time, Lisa is wrestling with MD Anderson and I’m wrestling with the VA. The VA would say, we told them they would pay, what more do they want? MD Anderson would say, we don’t like the way the voucher is worded, we want a few more things put into it. In the mean time we’re stuck in the middle. I would say to the VA, if you would call MD Anderson, you could have this worked out in a couple of minutes. The VA says they are physically unable to make those kinds of outbound calls. So we say to MD Anderson, here’s the lady’s direct line, if you’ll call her we can get this worked out in no time! Reluctantly (very reluctantly) she finally agreed.

In the mean time MD Anderson suggested that we apply for financial assistance. I assumed that this was going to come from the drug companies. After all, aren’t they the ones that really want to see me get into their trials. If they can cure me, they could make gazillions of dollars.

We had to scrounge up paperwork from everywhere. Fortunately this was a couple of days before we started packing the house, so I was able to lay my hands on it. We got every submitted that MD Anderson asked for. Of course, two days later they called back and asked for even more stuff. Again, we were able to get it to them within an hour or two of their request.

While we were fumbling around getting our paperwork together for the financial aid package, apparently MD Anderson and the VA spoke to each other. They worked everything out, or so we were told, and we had a green light. As it turns out, MD Anderson is still unhappy. Although the VA did include all of the language that MD Anderson wanted, it was put in the addendum section of the voucher instead of the main body and that’s just not good enough!

Yesterday we received word that our financial aid package was denied. I thought that was really odd, because we really don’t make any money to speak of. It turns out that the financial aid was through a federal program (not the pharmaceuticals) and because I’m already insured by a federal program (The VA) this program won’t touch me.

So there you are. That’s my story. I’m 45 years old. 10 year Veteran of the Navy.  I have a wonderful family. Two jobs that I adore. I am a taxpaying, productive member of society and I have somewhere around a year to live without treatment. Everyone is sympathetic to my plight, but unwilling to help. The VA is a typical bureaucracy; they people I talk to want to help, but can’t. Our point of contact at MD Anderson seems completely put out by us and all of our phone calls.

I don’t know where to turn now. I suppose the thing to do is start looking for research studies in other parts of the country. The real problem with that is that even if I do get accepted, I know that it’s a gamble. I would so much rather be close to my family through this then say Chicago.

At this point I am ready to go to the media. Is this the way that we treat our Veterans? Is this what healthcare is going to look like in a few more years. Surely this is the type of story that they carry. Perhaps if enough attention is brought to this, someone will relent and agree to cover my treatments.

If you’ve read this far, I really appreciate it. I know this was long, but it’s been building for a long time. Perhaps you have some advice. Perhaps you want to share it with the media? I’m going to.

I don’t know what my future holds; no one does.  I do know this…  It’s been since May 21st since I last had any treatment for my cancer.  It’s not getting any better.  We have to do something before I absolutely reach the point of no return! 

 

Living in Denial

It’s been a few weeks since we posted. Frankly, we are just living in denial at the moment. We have taken this time of “summer with no children” to laze around, go fishing and kayaking, cook and eat amazing meals and enjoy Paul’s good health in all facets. Hearing the news that he has exhausted all FDA approved treatments has definitely effected his mood and spirit. It really showed at work with his sales being pretty dismal. (not that I care about ANY of this mind you……I just don’t want him discouraged or giving up….work will wait in my opinion.) But he is working his way through it and is ready to face July with a renewed sense of purpose and drive. In typical Paul fashion he just had to work it all out internally and now seems to be on the right track.

Of course, a constant source of frustration is dealing with the VA and our attempts to get him into MD Anderson. After waiting 2 weeks to get the VA “voucher” we got it sent off to MDA along with all his medical records from the CC Cancer Center. After waiting another week and a half I finally got to speak to a patient advocate in the gastrointestinal department. She told me that the “voucher” isn’t what they needed and they needed an actual “authorization” instead. *sigh* So now we have to get the VA doc to call MDA so she can give him the “codes” and they can get the “authorization”…..I’m sure that will be easy….NOT……it gets better….after that, MDA will draw up a CONTRACT that they will want the VA to sign guaranteeing payment. She informed me in her 14 years there she has only seen ONE person get it signed and he was from out-of-state. So yea……

After speaking with her some more I informed her of some of our history and that we had already exhausted FDA approved treatment and we are really seeking experimental. I said “I KNOW if the VA won’t pay for REGULAR treatment they sure as hell won’t pay for experimental. My insurance company said Paul will be denied due to pre-existing conditions and even if they DID cover him, they don’t cover experimental treatment either. So how in the world do these people get into clinical trials?” That’s when she put me on hold, contacted someone in that department and came back with some info. She had a packet to send us (I insisted she e-mail it) getting all our financial information. Basically an application for financial assistance. Little did she know Paul has all that info at his fingertips. We had it filled out, signed and faxed all 18 pages back to her the same day (this past Friday). So the plan is for me to start nagging them on Monday. It sounds like we may just bypass the VA altogether.

I know this much, I feel like I am wearing out. Maybe because he looks and feels so good I feel like he isn’t even really sick….that this has all just been some horrible nightmare and everything is fine. Of course, I know that isn’t true. And come Monday I will don the armor once more and go into battle to get him where he needs to be so we can get this over with once and for all.

Meh :/

Underwhelmed…that pretty much describes our trip to see the research oncologist at CTRC (Cancer Therapy and Research Center) in San Antonio. We met with Dr. Lu last year after Paul had his Whipple procedure. We actually started his first go round of chemo with CTRC but moved it to the Corpus Christi Cancer Center when it was determined both facilities would do the identical treatment. It just wasn’t worth the drive 2.5 hours each way when we could do the same thing at home.

So we caught Dr.Lu up on all the treatments and surgeries Paul has had to date and answered all his questions. We also provided him the slides and reports from his baseline PET scan and the one he had on May 25th. Dr. Lu took all that info to the study coordinator. After about a 10-15 minute wait he returned with 2 packets in his hand. Apparently there were only 2 Phase 1 studies he would be eligible for and we should take them home and read them and decide if we wanted to participate. He recommended one over the other but he really didn’t “sell” either of them to us. It was sort of like “meh…we can try one of these….I guess…” so we weren’t exactly left with the warm and fuzzies. He encouraged us to investigate other hospitals and even recommended another research facility right down the street. He also said it would be a good idea to contact MD Anderson and other large cancer hospitals and they may have other clinical trials we would like to try.

The first clinical trial, the one he recommended, was the testing of a drug that is currently being used to treat patients with prostate cancer. After reading the details of the study it appears they are simply looking for people with incurable cancer to submit to testing to see how much medication they can tolerate. There was nothing about the possibility of this drug improving his chances of survival. So yea, no thanks.

The second trial was a little more interesting in that there was a possibility it could shrink tumors and increase life span. That drug required 21 days of administration and 7 days off. Total test time was 6 mos. Paul and I are totally prepared for the possibility of his having to relocate during a clinical trial but this one just didn’t blow our skirt up so we are going to continue looking.

Maybe it’s unrealistic to expect someone to be happy to see us as a potential clinical trial subject. We were hoping someone would say “Oh yea! This one is perfect for you!” or “This one is going to be your best shot”…..something other than “lets throw this against the wall and see if it sticks”….that just didn’t inspire confidence.  So again, the search continues.

After our appointment we got to meet with financial advisers. That wasn’t fun. Very nice ladies  but it became very clear our lack of insurance was going to be a problem. In their experience the VA won’t cover this and sadly, my insurance won’t either since Paul falls under “pre-existing condition”. Some of it, like the actual experimental drugs are usually covered by the drug company but other things, like pre-trial testing (blood work, PET or CT scans, office visits, etc) will NOT be covered…..and they are incredibly expensive. I assured them I know how to make noise with the VA and they also gave us a few resources on how to obtain insurance for the uninsurable. As of right now we are considered a “self pay”. I am considering asking if they will accept one of my kidneys in exchange…..probably not…..

So that’s pretty much the scoop. We are exhausted and are looking forward to a good nights sleep so we can start again tomorrow. We continue to pray God will lead us to where we need to go to find Paul a cure.

–L

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