OVAC Lobby Day Review

OVAC Lobby Day: 7/7-7/8

This may be a little haphazard, but I’ll try to keep it somewhat organized.

The OVAC Lobby Days took place Monday July 7th and Tuesday July 8th. This is the first time I’ve done any type of lobbying, and was therefore an overwhelming, educational, terrifying, overall exhilarating experience.

OVAC, One Voice Against Cancer is a collaboration of non-profit organizations working together to try to find cures for cancer. OVAC has representatives from all across the country, every walk of life, all cancers. We all spoke of our personal experiences, which are very different, but our goal was the same, so we truly were speaking against cancer with One Voice. There’s something oddly uniting about the subject of cancer. We all know someone who has been touched by it in some way. Each of us at the event had our own personal connection to cancer. That is what brought us together.

Monday started with registration, and for me, a sort of awkward wandering around in the lobby until a few of us got to talking. The ladies I befriended in the lobby each shared their own personal stories. One of the ladies told me about her mother who had bladder cancer. Luckily she had responded to treatment, and is doing quite well now, but the experience is what inspired her to become an activist for BCAN (Bladder Cancer Advocacy Network)The other young lady I had the privilege to meet had very recently lost her sister to brain cancer. The pain was still so visibly fresh for her, and I admire her so much for having the strength to join the Brain Tumor association and tell her sister’s story.

After getting to know one another we went in to begin our training. OVAC Lobby Day 2014: Training DayThere were 88 participants from 30 states, and I’d say about 1/2 of us are newbies, so I was not completely alone 🙂 During training we were given 3 very specific goals, or asks; the end goal is of course making cancer research and prevention a top priority, thereby finding better treatment options, and hopefully cures. Specifically though we were asking for 1) $5.26 billion to be provided for the National Cancer Institute (NCI) 2) to ensure a proportional increase to NCI’s funding when there is an increase in the NIH’s funding, and 3) $510 million to be budgeted for the CDC Division of Cancer Prevention and Control.

These are pretty big things to be asking for, and pretty intimidating to be asking political leaders for them. But who else should we speak to other than the people with the power to help make the changes we are asking for? To speak to the decision makers, to tell them what their constituents want, and need; that is why we were there.

It was stressed to us during training that making a connection with the representative, congressperson, or staffer is a good way to start. Tell them where you’re from; down to the street or the neighborhood, then tell your story. Grab their attention; remind them where they are from. If you can make an emotional connection with them then tell them your story, then hopefully they will remember you better.

So with the goal of being remembered in mind, I plotted out a few ideas for the following day. Knowing that my nerves may get the better of me, I decided that it may be best for me to focus on the emotional aspect of our presentations. I’ve always been a nervous test-taker, and to me trying to remember the facts and figures felt very much like a test. I often get tongue tied when put on the spot, but I knew there were certain facts I knew I’d get right. I decided to focus on my story; when I was diagnosed, what my disease is, the treatment options available, and also the cost of said treatments.

I was in a very small delegation from my state. VERY. SMALL. There were only two of us. So our meetings were rather short. 20140712_140034We started the day on the senate side of the Capitol. 20140712_140114We met with a staffer from Senator McCaskill’s office, and from Senator Blunt’s office. After the meeting with Senator Blunt’s office, we had lunch, then headed over to the House side. 20140712_140123There we had a meeting with Ann Wagner (My state Representative) and a staffer from Sam Graves’ office (my fellow Missourian’s representative) All of the presentations on Tuesday, while brief were very meaningful.

gravois-20120210-00130My favorite part of the presentation is when I would start telling them about PegIntron, the medication that I have had the most success with. At this point I would pull out the box of meds that I brought with me, place it on the table in front of me and say “This drug is not yet FDA approved for use in MPN patients. I have been denied 3 times by my insurance company on the grounds that my purposes are “off label”.  This box costs $2000. It contains ONE dose of medicine. I take this once a week. That’s $104,000 per year for however many years I’m lucky enough to remain alive.” That tended to leave a strong impression on the folks I was speaking to. And then I would start to work in the asks. “With better funding for research, better treatments could potentially be approved for patients. More accessible treatments, mean healthier, more productive constituents.”

 While I was the only person I know of that was there representing MPNs, I am hoping that my presentation was memorable, not just to our elected officials, but also to the other participants. Just about everyone I spoke to had never heard of MPNs. So I’d like to think that I helped educate some other members of the cancer community.

I’m realizing now that I’ve done an awful lot of rambling, so I will leave you for now 🙂 Tomorrow I’ll be posting the mind-body techniques I referenced in my last post!

As always, you are your own best advocate. If you do not take care of yourself, who will?

Until next time,

Lina

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NORD MPN Patient Meeting, San Antonio, TX

Whew. So, that was quite an experience. Flew out last Friday afternoon, got in to San Antonio Friday night..the event was Saturday, and then I started writing this in the airport ready to fly home. (Then my fatigue really hit me, and I had to give up on the writing for a while. I needed a nap lol)

There were presentations given by Dr. Michael McDevvit of Johns Hopkins, two representatives (Sharon and Adriana)from the Leukemia Lymphoma Society and also from me.

Dr. McDevvit’s presentation as very informative. He talked a lot about clinical diagnostic criteria, and how you “know you’re in trouble when there are this many steps to a diagnosis”. SO TRUE. Since our diseases (ET, PV, MF)mimic one another, and also many other diseases, I guess it makes sense that they would have to add several other steps to the diagnostic criteria to ensure that they are actually diagnosing us correctly. And there is still no guarantee that will happen. It seems that we are misdiagnosed more commonly than we are diagnosed correctly.

Adriana, and Sharon, from LLS presented on the different functions of LLS. How they raise money, how they support patients, different support groups that are available, etc. They also taught us some mind body techniques to help with the stress, and the fatigue that can sometimes come our diseases. If anyone is interested in that, I will post them here 🙂 Let me know in the comments.

The following is my presentation (in full…not the truncated version I ended up delivering)


 

Hello there! I’m so glad to see so many of you here today! I’d like to start out by saying that if I appear

nervous, please forgive me. It’s only because I’m mildly terrified. (smile)

As they said, my name is Emily, but I usually go by the nick-name of LinaMPN on social media, and my

blog, so I’m more of a behind-the-scenes kind of girl, but I will do my best here today.

I am 27 years old, and I have Essential Thrombocytosis. I was officially diagnosed when I was 18

years old, after an initial misdiagnosis by my GP. I presented with fairly vague symptoms of fatigue,

headaches, and bruising. The fatigue, I was able to write off because I was 18, a freshman in college,

taking 18 credit hours that semester, working, and trying to maintain some semblance of a social life.

So it was pretty easy to pass off the fatigue as “overwork”. The headaches were also relatively easy

to ignore as a symptom, because I’ve had migraines since I was 10 years old. Headaches were not

unusual for me. But the bruising was harder to ignore. It seemed that just about every day a new,

large bruise was popping up somewhere. Normally if you have a bruise the size of a softball on your

belly, or your arm, you know where it came from, or how you got it, but these bruises just seemed to

randomly appear. After visiting my GP with those symptoms, she felt it would be best to draw some

labs. Somehow my platelet count came out as 13,000, which led to an incorrect diagnosis of Idiopathic

Thrombocytopenic Purpura, or ITP. My GP decided to prescribe me steroids, and play that watch and

wait game for a while. After a brief stint on prednisone my GP decided we should draw another CBC.

As it turned out, my platelets were actually 2.6 million. When we discovered this, my GP immediately

stopped my prednisone regimen (YAY!), admitted that I was far too weird for her to treat, and referred

me to a Hematologist.

This hematologist decided that it would be best to do a bone marrow biopsy (everyone’s favorite event,

I’m sure…) and the results confirmed ET. After diagnosis, and much discussion my hematologist decided

that it would be best to begin taking Anagrelide. How many of you have taken Anagrelide? And how

many of you had issues tolerating Anagrelide? I’m one of those people who did NOT tolerate Anagrelide

well; headaches, heart palpitations, dizziness, shaking. It did not help that the hematologist I was

seeing had never treated an MPN of any variety before. What helped even less was that he was a fan of

changing the dosage of my Anagrelide every. Single. Week. The higher the dose, the worse the side effects, and

unfortunately no matter what the dosage, we never did see the corresponding drop in blood counts that

we were hoping for.

At this point my family and I determined it might be best to try a different doctor. My mother was

undergoing treatment for breast cancer at the same time this was happening, and so she asked her

oncologist if he had any recommendations, which led me to my current oncologist.

My new oncologist determined that Hydrea would probably be a better fit for me, so we began at a

relatively low dose. But we found that it took 2 grams per day before we finally saw an effect on my

platelets. Unfortunately it also caused a HUGE drop in all the rest of my blood counts as well, so we had

to discontinue it for quite a while.

Being a young/tech savvy patient, I spent a lot of time researching alternative treatments. I had heard

that a lot of other patients were having a lot of success with Interferon, and I very much wanted the

chance to try it.

My doctor is fairly conservative though, and had never treated a patient with it before. It took several

months of pushing, and pleading, and darn near begging, before the doctor would agree to it. Even after

he agreed though, we still had to deal with the insurance company. The use of PegIntron, which was

the chosen version of the medication, is not approved by the FDA for the treatment of MPNs. I had to

appeal to my insurance company three times to see if they would allow the off label use to be covered

under my policy, and unfortunately, that answer was no. Luckily though, I was able to get my meds

directly thru the drug company, through a patient support program they offer.

I was on PegIntron for 2 years, until this past March when I had some complications that we later

found were unrelated to the treatment. Oddly enough, my counts are continuing to go down, even off

treatment, so for now we are on “watch and wait” until my next CBC in July. If my counts continue their

downward trend, then it might be time for another bone marrow biopsy.

That’s more than enough about me, let’s talk about the group I’m here to represent. I am here on behalf

of the MPN Research Foundation. They were founded in the year 2000 by a group of patients who were

very disappointed by the lack of available information and the lack of research that seemed to be taking

place for MPNs. Hoping to change that for other patients, the MPN Research Foundation was born.

Since this group was founded by patients, you can be certain that their goals are the same as yours;

The main goal, is finding a cure. The MPN Research Foundation only funds projects relevant to PV, ET

and MF, and the terms of each grant are negotiated to make sure they maximize the money invested

in actual research. To date, The MPN Research Foundation has awarded approximately nine million

dollars for MPN research. In the year 2014 alone they have One Million Dollars in grants planned. While

their main goal is to further research, they also want to support patients in as many ways as they can,

particularly thru partnerships with groups like NORD.

They connect patients with doctors. They connect patients with research studies, with support groups

– most importantly, to me at least, they connect patients with each other! I don’t know about the rest

of you, but when I was diagnosed, I felt extremely isolated. There was no one that I could talk to that

really understood what I was going through. Now don’t get me wrong, I have an extremely supportive,

wonderful family, and great friends, but the blank stares when I would try to explain how I was feeling

were not terribly reassuring. It wasn’t until I stumbled upon the MPN Research Foundation and was

connected with their patient support groups that I felt that I was no longer alone. From the very first

meeting I attended in 2011, my entire perspective on my disease changed. Just knowing that there were

people out there who were working to change the way that people understand MPNs, and that are

working to help find a cure made me feel so much better, and inspired me to become a more proactive,

empowered patient.

The best things that you can do for yourself are to get educated, and to be proactive! Learn as much as

you can about the latest research and treatment options. Take your knowledge and share it with family

and friends! Become an MPN activist, and join the MPN Research Foundation in pushing MPN Science

closer to better treatments, and hopefully a cure for our diseases!

To find out more, I strongly recommend that you take some time out to look at the website. There you

can sign up for their newsletter, and see the latest news, research, and information on events you can

attend.

As always you are your own best advocate. If you do not take care of yourself, who will?

Thank you very much


 

Next up on the agenda is Washington D.C. for the OVAC Lobby Days! I’ll be there on 7/7-7/8. I’m excited and nervous. Mostly excited. I’ll update as I am able, and hopefully we will see a good positive outcome!

As always, you are your own best advocate, if you do not take care of yourself, who will?

Until next time,

Lina