Wednesday, May 31, 2017

Reflections of a Cancer Survivor



June 1st is my mother’s birthday. I love that wonderful feisty woman with all my heart. Her joyful spirit is a constant reminder to me that survivors can live a joyful life. I miss her so very much. I was only 37 when she died of cancer.

July 12, 2017 will be my 5-year anniversary taking an experimental oral cancer drug that put me into clinical complete remission January 2015. This is a time for deep contemplation on the life I have been blessed with after I was given no options.

I know that at any time the cancer I have could raise it’s ugly head, so what have I learned and how have I managed to live my life well?

• Make my time here on earth matter.
• Forgive those people in my life who are caught in the quagmire of pettiness, unhealthy relationships, twisted logic, and judgment. Let them go with love, if they become too toxic for my survival.
• Tell those whom I love how much they mean to me.
• Live in the here and now. Today is all we have. Don’t get stuck in yesterday. It’s gone. The value – whether negative or positive -- made me who I am today. Tomorrow is a dream. It hasn’t happened yet.
• I am really good at certain things and I stink at other things. LOL. Spending my time doing things I am good at is a good use of time. Spending time doing things I stink at may not be a good use of my time, but it may develop my sense of humor, give me humility, and help me to respect those who excel at that thing.
• Don’t judge others. I have no idea what burdens they are carrying in their lives.
• There is always someone who is worse off than me. There is always someone who is better off than me. So deal with the cards I have been given and enjoy the ride.
• I am the master of my journey. We have this one opportunity on earth to live our lives. Don’t waste it.
• Don’t try to solve other people’s problems. It is their life and they have the free will to live it as they choose. Don’t give anyone advice, unless they ask for it. (I am assuming that you are reading this blog because you are looking for advice. LOL.) Most people just want to be validated.
• Count my blessings every day.
• Stay away from people who can only find fault in others. Life is hard enough without a Negative Nellie bringing me down.
• Don’t take life too seriously. Hang out with children. They know how to play. I watch my granddaughter sing and twirl and dance. There is much to be learned from children.
• Be kind. Be kind. And be kind.

Friday, May 12, 2017

Congressional Bills to help Medicare Cancer Patients with Drug Costs



Washington, D.C. Capitol

 From L to R: Jim Brewer, Rocky Harris (my son), Andy Gordon
La Verne Abe Harris, Senator Flake, Carolyn Earley, and Wes Gullet

Forty-three states and Washington, D.C. have advanced laws to ensure that patients taking oral drugs at home receive equitable coverage to patients treated at a clinic. These laws apply to those patients who have a state insurance. For those patients on Medicare or on a federal insurance, these state laws do not apply. That is why six of us were in Washington, D. C. the first week of May to talk to members of the U.S. Congress about the affordability of cancer drugs for those on federal insurance.

Wednesday, May 3, 2017 Senator Jeff Flake took a break from FBI Director James Comey's testimony before a Senate Judiciary Committee hearing to talk to the six of us representing the Leukemia & Lymphoma Society (LLS). Sen. Flake mumbled ”mildly nauseous” and shook his head as he approached us.

The LLS group talked to Senator Flake, Senator McCain’s office, and several House of Representative offices ( Representative David Schweikert's office, Representative Kyrsten Sinema's office) about several bills going through Congress that directly affect cancer patients. Thank you Jackie Davis of Nebraska, T. Irwin, Trudy Erickson, and Jerry A. Dale for providing letters that I hand delivered to the Congressmen and Congresswomen.

Here were our LLS Mission Day talking points for the Senate:
The Ask for the Senate was to cosponsor the C-THRU Act, 5.637 (Medicare Part D bill) to lower drug costs for seniors.

Problem:
Medicare Part D prescription drug plans are becoming more costly to Medicare patients. Cancer drugs placed on a specialty tier force patients to pay a percentage of the retail drug price, not a flat co-pay.

Solution:
Medicare patients would be able to negotiate the cost of the drug and use the plan-negotiated price —not the retail price— as the foundation for cost-sharing. This would lower the out-of-pocket costs substantially.

The Ask for the Senate was to vote NO on the AHCA, H.R. 1628

Problem:
Insurance would not be affordable for cancer patients and the USA would revert to a health system where much higher prices are charged to a person who has a pre-existing condition, such as a cancer diagnosis. In the past this accounted for survivors paying more than 10 times the premium charged to a healthier person. Medicaid coverage for millions will be eliminated leading to an additional 24 million more Americans without insurance, according to the Congressional Budget Office.

Solution:
Reject the AHCA and Congress needs to identify solutions to the problems between patients and their treatments by working with groups like the Leukemia & Lymphoma Society.

The Ask for the House of Representatives was to sponsor the Oral Parity bill, H.R. 1409.

Problem: Over one-third of the new drugs to fight cancer come in the form of oral pills. Because health insurance rules were written before the invention of oral drugs, chemo drugs delivered intravenously are covered, but oral drugs fall under prescriptions. This results in patients paying hundreds of thousands of dollars more to the health plan for oral drugs, even if the chemo drugs delivered intravenously cost more.

Solution: Cancer drugs are cancer drugs whether they are delivered intravenously or orally. There should be parity for Medicare patient out-of-pocket costs and for patients on federal health insurance. Forty-three individual states have adopted oral parity laws with no negative impact on insurance premiums. This protection needs to be extended to those 65 and older.

The following Ask was not honored by the House: The Ask was to vote NO on the AHCA, H.R. 1628

Problem:
Insurance would not be affordable for cancer patients and the USA would revert to a health system where much higher prices are charged to a person who has a pre-existing condition, such as a cancer diagnosis. In the past this accounted for survivors paying more than 10 times the premium charged to a healthier person.
Medicaid coverage for millions will be eliminated leading to an additional 24 million more Americans without insurance, according to the Congressional Budget Office.

Solution:
Reject the AHCA and Congress needs to identify solutions to the problems between patients and their treatments by working with groups like the Leukemia & Lymphoma Society.


Andrew Schorr, Co-Founder and President of Patient Power posted very good news from the Business Wire for Washington, D.C. cancer patients: http://www.businesswire.com/news/home/20170511005460/en/Patient-Power-Law-District-Columbia-Protect-Local.

The Specialty Drug Copayment Limitation Act signed by D.C. Mayor Murial Bowser was reported on May 11, 2017 to protect local patients from high copays for prescription medications. The new law, titled the "Specialty Drug Copayment Limitation Act,” will “impose a limit on the amount that a person must pay in copayment or coinsurance through a health benefit plan for a prescription for a specialty drug.” This refers to prescriptions for progressive, debilitating diseases such as cancer – the bill specifically mentions the blood cancer multiple myeloma. 
 
“The law doesn’t go into effect until January, but we want to acknowledge this important step now amidst all of the turmoil over federal healthcare legislation,” said Andrew Schorr, Co-Founder and President of Patient Power and a 21 year cancer survivor. “High out of pocket payments can prevent many patients from taking the full dose of medications they need. Putting a limit on those personal payments can help patients like me. I’ve depended on specialty medications to keep me alive and well and working 21 years since my initial diagnosis.” 

Esther Schorr, Patient Power Co-Founder and Chief Operating Officer, added, “The law will limit out of pocket payments to $150 for a 30-day supply of specialty medicines and $300 for a 90 day supply. This is critically important not just for patients but for their families. We should never have to make the terrible choice between the health of our loved one and the prospect of bankruptcy or losing our home.” 

Affordable copayments do make a difference. Greg Simon, Executive Director of the Cancer Initiative for the Biden Foundation and a CLL survivor, recently told Patient Power in an interview that manageable copays made a big difference for him. He said that although some innovative cancer therapies can be very expensive, his own copay was very affordable. 

This may sound costly to the healthcare system, but it actually saves money. A 2013 report study published in the Journal of Clinical Oncology said patients not taking their medications as prescribed “resulted in $105 billion in avoidable health care costs in 2012.” 

Similar bills have also passed in California, Delaware, Louisiana, Maine, Maryland, Montana, New York, and Vermont. The D.C. law takes effect January 1, 2018.

Now if we could just get this passed across the USA for Medicare patients!