Archive for affordable cancer treatment

#ideclare4lls – the squeaky voiced lobbyist from TEXAS

Posted in Uncategorized with tags , , , , , , , , , , , , , , , , , , , , , , on May 9, 2014 by runmyssierun

I spent the last few days in Washington, D.C. with some pretty phenomenal cancer fighters – we made our voices heard on the Hill.  Y’all know that when someone else says it better than I do… I just let them. This post is taken from LLS Interim CEO Dr. Lou DeGennaro’s blog.

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With almost 400 cancer fighters declaring the end of cancer… I figured I would help you find me… I’m at the VERY top of the group. You’ll see three heads (I’ll be the third head) and mine is (if you imagine a clock, I’d be right at the 12) right smack at the top center

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After a group photo on the steps of Capitol Hill, where nearly 400-strong raised our hands and declared Cancer Ends With Me, (#Ideclare4LLS) we all – patients, survivors, families, volunteers, staff – dispersed to meet with our district legislators. Our objective: to urge our legislators in both Houses of Congress to support two critical pieces of legislation that would improve access to therapies for blood cancer patients.

 

One bill, HR 460, would limit cost-sharing for patients who require specialty tier drugs. The other, S1365, would allow a patient on Medicare to appeal if a prescription drug they need is placed on a non-preferred drug tier, meaning it comes with very high out-of-pocket costs. The law would allow patients to appeal to have the drug placed on a preferred drug list with lower coinsurance, if their prescribing physician deems it the patient’s only option.

 

While delivering our message, many advocates shared their stories with the representatives.

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“What’s the point of research if patients don’t have access to the therapies,” Ethan Zohn, star of Survivor: Africa, and a two-time Hodgkin lymphoma survivor, told Morgan Brand, an aide to Sen. Charles Schumer (D-NY).

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We were treated to two more special speakers during our morning session. Sadie Floyd is a 22-yer-old competitive drag racer who was diagnosed with acute lymphocytic leukemia when she was 2. She has committed to using her racing career as an outlet to get the word out about blood cancers.

“What LLS does on a daily basis is why I am alive today,” she said.

 

Rep. Anna Eshoo (D-CA) urged us on, saying “I love to be with advocates. You have power.”

 

We concluded our three day conference with a special performance at D.C.’s Union Station by Charles “Chip” Esten, a singer and actor, known for his role in the ABC drama series “Nashville.” Esten’s daughter is a leukemia survivor.

 

After the devastation of hearing their daughter had cancer at age 2, Esten said learning that there were treatments with a good chance of success turned their fears to hope. “That hope didn’t come from nowhere; it came from research and it came from funding that pays for research.” Today his daughter is 14.

** BUT Chip did something way more personal for ME, Lynda and Dezma:

 

As we gathered at Union Station, passersby stopped by to visit our Awareness Wall, placing stickers declaring Cancer Ends With Me and signing our petition to support the legislation discussed above.

 

Over the past three days of our conference, “Leading the Way to a World Without Blood Cancers,” we heard from renowned researchers, survivors, families and volunteers and shared best practices. We celebrated a major milestone – surpassing $1 billion in research investment – and we brought our cures and access agenda to the Hill. I leave feeling energized and knowing that all of the participants feel same the same – ready to keep fighting to make blood cancers a story of the past. LLS is making cures happen today, not someday.

Together – because it’s too hard to do this by yourself

Posted in Uncategorized with tags , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , on May 3, 2014 by runmyssierun

Being sick this last week has been a blessing. Laryngitis restricted me from mouthing off with emotion when ignorance was blaring and a lesson I learned a long time ago was you can never make sense to those who are senseless. Being stuck in bed gave me the needed rest to far exceed what I thought my body was capable of doing and this will be tested late this month. And best yet… I am convinced now more than ever that not hundreds but THOUSANDS of people around me see that change needs to happen and we are now all willing and able to do this TOGETHER.

Eddie Arguelles helped me become a cancer awareness advocate. Because of that, he helped me keep my promise to my mother and my Aunt Sissy who both lost their lives to cancer. Eddie had a cause of his own. He wanted to ride his bike with his family safely through the streets of the Valley. He was one of the biggest bicycle safety advocates I knew.

It was beyond tragically ironic how his life ended.

Now, his fellow cyclist friends and communities have come together to finish what he was not allowed to.

After all that I witnessed this week, there are no words in the English language that can capture the energy, the unity and the willingness to make the changes needed to run, ride and drive together here in the Rio Grande Valley of Texas.

Many of my local cities invited me to and my fellow cyclists to unify efforts to make running, riding and driving safer together. Incredibly progressive strides are being made in record time by multiple municipalities. Never before have I witnessed such a desire for needed change!

Many of my local cities invited me to and my fellow cyclists to unify efforts to make running, riding and driving safer together. Incredibly progressive strides are being made in record time by multiple municipalities. Never before have I witnessed such a desire for needed change!

 

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I had my cardiology exam today. I have a real good close relationship with all my doctors and their staff. They keep abreast of all my shenanigans and call me in before my big events to check up on me and make sure my body is running well.

As my nurse asked me to lift my shirt and place the stickies on my chest for the EKG, she mentioned how well my blog was coming along and how proud the staff was of all that I was doing and how far I had come. I couldn’t help but think how much better this scenario was as opposed to the mammogram and colonoscopy a few months ago.

Dr. Manohoran came in shortly afterwards and had told me it was time to do another stress test because of the irregularity that was found that first time around. *I was born with a genetic heart defect that he monitors quite often. He also noted that I was completely off my cholesterol medication and doing quite well.

He asked me about my trip to Washington DC and wished me well, scheduled my stress test to happen after my trip but before my triathlon. AND he didn’t leave the room without a “selfie” and his big bright smile.

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Doc Manohoran is ECSTATIC with my cardiac results!!! Can’t you tell???? That IS his #happy face!!! Seriously!!

If any of you all have made the decision to begin your own fitness journey, I hope you do it the right way with doctors who understand and encourage you the way mine have with me.

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And I’m not posting the latest media stories about Eddie today because my fellow cyclist friend who sat by me in court today said it better than I or any other journalist could. I am reposting his words:

I had a surreal experience earlier today at the bond reduction hearing for the man who killed my cycling buddy Eddie Arguelles. The judge opened the proceedings by asking: “Why are there so many people in my courtroom?” We then got about to the business at hand, which was the defense’s contention that the bail violated the defendant’s Eighth Amendment rights. The judge said something I found curious, namely that he was sure most of the cyclists and Eddie’s family members wanted to see instant punishment in this case. The judge argued that this, very human sentiment, violates our constitutional liberties.

I agree. The defendant deserves the chance to explain his actions which, given the circumstances, may in and of themselves represent a second level of punishment for the crime he purportedly committed. The defense argued that, lacking a toxicology report, there is no way to support the idea that the defendant was impaired at the time of the incident. The judge retorted that if he was not impaired, then the defendant’s actions (in trying to dispose of the remains of my friend) are inexplicable.

I looked at the defendant for some time today. He seemed almost pitiable. The proceedings seemed to be far above his ability to understand. He had a dull-witted, almost animalistic look to him. He seemed to represent humanity at its most basic level, a product of a self-indulgent and degenerate individualism that values sensual gratification at all costs. I saw nothing evil in the defendant, but I did discern something that is foisted on us all through popular culture, a bombastic braggadocio, an amoral dislocation based upon a fin-de-siècle mindset that unfortunately has at its end no promise of the brighter and more ethical future essential to creating a happy society. He is a symptom of a fundamental disrespect for the other that is spreading like a cancer in our society today.

None of this brings my friend back to life. None of this eases the immense sorrow the defendant has unleashed on the world. I wonder what can be done to change this, to save people such as the defendant before he becomes the terrestrial equivalent of an asteroid, lacking a moral sensibility and vaulting through space and time with little recognition of his impact on others.

 

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