CSC on Capitol Hill

CSC's Joanne Buzaglo, Vice President of Research and Training speaking at Capitol Hill with other representatives from the Partnership for Part D Access

CSC’s Joanne Buzaglo, Vice President of Research and Training speaking at Capitol Hill with other representatives from the Partnership for Part D Access

On Tuesday, September 30th, Cancer Support Community, along with various other members of the Partnership for Part D Access, a coalition of organizations working toward a collective mission to preserve Medicare beneficiary access to vital medications, attended briefings on Capitol Hill to express their perspectives on the importance of preserving the six protected classes of drugs under Medicare Part D and to urge Congress to maintain the protected status of these six classes.

Under current policy, individuals with Medicare Part D prescription drug coverage are guaranteed access to “all or substantially all” drugs within six protected classes: anti-cancer, anti-convulsant, antidepressants, antipsychotic, immunosuppressant, and HIV and AIDS drugs. Medications in these classes help manage health conditions such as mental illness, organ transplants, epilepsy, Parkinson’s Disease, lupus, HIV, and cancer.

In January 2014, the Centers for Medicare and Medicaid Services (CMS) proposed changes that would remove this protected status for two of the drug classes—antidepressants and immunosuppressants. The agency’s proposal also left open the possibility of further exclusions of additional classes in coming years. Due to the efforts of the Partnership for Part D Access, patient advocacy organizations and other affected stakeholders, CMS withdrew their proposal.

CSC applauds CMS for withdrawing the proposal and continues its work with the Partnership for Part D Access to highlight the need to preserve the six protected classes policy.

Cancer Support Community participated in the September 30th briefings on Capitol Hill to discuss the importance of the protected classes for Medicare beneficiaries facing cancer diagnoses. Joanne Buzaglo, Ph. D.,  Vice President of Research and Training at CSC’s Research and Training Institute (RTI) spoke on along with other representatives from the Partnership for Part D Access, including Dr. Nicole Brandt (UMB School of Pharmacy), Dr. Matthew Cooper (MedStar Georgetown), Dr. Raymond Martins (Whitman-Walker Health), and Dr. Jeanie Tse (Institute for Community Living). The panel also included the brave and insightful voices of Trudy Lapin, an individual living with bipolar disorder, and Carlton Ziegler, an individual living with epilepsy.

During the briefings, Dr. Buzaglo spoke about the importance of treating “the whole patient,” the complexity of cancer treatments, particularly for those with multiple diagnoses of cancer and other chronic diseases (RTI’s Cancer Experience Registry data show that people with cancer over the age of 65 report an average of 2-3 additional “comorbidities” or diagnoses). She and other speakers stressed that with the increasing complexity of care and drug regimens for multiple illnesses among the elderly, that patients (and their physicians) need access to the full range of available medications in the protected classes. They noted that often, finding the right medications is a process of trial and error, and that some drugs may cause varying side effects or interact with other medications a patient requires. Finally, there was a strong underlying theme around mental illness and the critical importance of having a full range of options for treatment of depression, not only because depression and mental illness affect the quality of life of so many people but also because of their impact on health and cost-related outcomes.

For more in-depth information about CSC’s position on this issue, see our letter to Marilyn Tavenner, administrator of CMS. For more information on this issue, please see the Partnership for Part D Access website.

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When men get breast cancer

To kick off Breast Cancer Awareness Month, this week’s guest blogger is Darrell Skaggs, a breast cancer survivor from Indiana. Darrell’s story reminds us that breast cancer affects us all and does not discriminate.

DarrellI work in the Security/Safety department at a distribution center in Indianapolis, Indiana. I am 63 years old and have been married to my wife Wanda for 41 years. We have two sons, a daughter-in-law and four beautiful grandchildren. I guess we would be considered a “normal family,” but the challenges we were given in March 2010 were less than normal.

On March 6, 2010, I went to the emergency room with severe pain on my right side. Several years before I was diagnosed with gallstones, so I was sure I would receive something for pain and everything would be fine. After several tests the doctor informed me what I was already aware of—that my gallbladder was bad. He stated my gall bladder would need to be removed but he would still like to do a CT scan just to see how bad it was. What I didn’t know was that the CT scan was going to save my life.

After the scan was reviewed, the doctor came back to my room and informed me that my gall bladder was bad, but that they had also noticed a large mass in my left breast. The doctor scheduled an ultrasound of my left breast two days later at the “Women’s Center.” (I wasn’t real happy about going to the “Women’s Center”)

When my wife and I arrived at the Women’s Center, I was told I would need a mammogram. I asked the technician, “Are you serious?” Mammograms are bad enough for women, but God did not design men for the mammogram. Then, a doctor came in and said she would like to do the ultra sound herself. She found the mass and asked when would be a good time to schedule a biopsy. I said, “right now,” so she proceeded. She took several samples and said she would have the results by Friday. I told her as soon as she gets the results to just send them to my family doctor, and have him call me immediately.

Thursday of that same week I received the call. Now, for someone who has been in the security field for 26 years and who served in the United States Army in the 70’s, I have always been trained to be prepared and ready for the unexpected. What I was about to hear was the unexpected. My family doctor said, “Darrell, I didn’t want to tell you this on the phone, but you said you wanted to know immediately. It’s breast cancer.” I wasn’t prepared for that. To be honest, I don’t remember the drive home from work that day. When my wife got home, I told her the news. After many tears and prayers we started researching on the Internet for surgeons who specialize in breast cancer. We found a surgeon who had specialized in breast cancer for 24 years. We were able to get an appointment two days later. She was very caring and talked with us for over an hour explaining the procedure. She had a team of three other surgeons and two oncologists that would be assisting her. On March 31st I had a six hour surgery to remove my left breast and woke up to receive some great news, they got all the cancer! The doctors told me they removed my gallbladder and the cancer. They also removed two lymph nodes and tested them in the operating room. The lymph nodes tested ok but they would still send them to the lab to make sure. Two days later I was hit with the news that one of the lymph nodes had cancer in it, so I would need another surgery to remove another row of lymph nodes.

The ups and downs of this journey were more than I was expecting. I spent ten days in the hospital. The next surgery was successful, and after four rounds of chemo I am now cancer free. Don’t get me wrong. I still think about it every day, and in the back of my mind I think about the possibility of the cancer returning. But, this story is not all gloom. I have tried to stay positive during this whole process.

Good things have come out of this experience, and I’m sure more will come. Each morning when I step out of the shower and I see this ugly scar on my chest, it reminds me of my journey and how fragile life is. The scar also reminds me that I have to keep telling men about breast cancer.

My family and I are now involved with the Susan G. Komen Race for the Cure. I have also been an ambassador for Komen. In 2012 and again in 2013, I was chosen to be a “Model of Courage” for Ford Motor Company’s Warriors in Pink. They chose 11 breast cancer survivors (one other male) from all over the United States to help promote breast cancer awareness and raise funds for research. Ford sells Warriors in Pink apparel where 100 percent of all net proceeds go to the fight against breast cancer. The 11 of us modeled the apparel. (And I thought my modeling days were over) We also did a breast cancer documentary. All of this and more can be found at www.fordcares.com. Recently, I started volunteering for The American Cancer Society. When a male is diagnosed with breast cancer anywhere in the United States they can call me if they just need someone to talk to.

This is not just a woman’s disease, or a man’s disease. It affects the entire family. My family has been my best support. Men, breast cancer is serious.

If you are a man impacted by breast cancer, you’re not alone. Call the Cancer Support Helpline at 1-888-793-9355 for support, resources and more. The Helpline is open Monday-Friday 9 a.m. to 8 p.m.

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A hidden battle in the cancer journey

bigstock-Hope-For-Future-3649887A recent study published in Lancet found that three-quarters of cancer patients who are clinically depressed do not receive the therapy they need, creating a “huge unmet need.” The study argued that although depression is widely overlooked, treatment would cost a fraction of cancer drugs.

The study points out that although feelings of sadness can be common with a cancer diagnosis or any other major health issue, depression is much more than just temporary sadness. Individuals with depression may feel persistently low, find it difficult to sleep and have poor appetites.

The research focused on 21,000 individuals living with cancer in Scotland. It found that 6 to 13 percent of these individuals were clinically depressed, significantly higher than the two percent in the general population. Additionally, 75 percent of the individuals with depression did not receive adequate treatment. Many did not consider seeking treatment themselves. Further, the medical professionals they routinely visited did not pick up on or diagnose their depression.

The Cancer Support Community’s Research and Training Institute has also done research on the topic. In CSC’s Cancer Experience Registry, a survey of metastatic breast cancer patients found that, among patients that were seen at a community cancer center or private oncology practice, 50 percent of them were never asked about distress. Even when seen at a comprehensive cancer center, 35% of patients were not asked about distress. When looking at those patients who were asked about distress, regardless of the care facility, 20 percent never received referrals for managing it.

As a result of the Lancet study, the researchers recommended a new, nurse-led approach to treating depression. This approach combined anti-depressant drugs, problem-solving therapy and encouragement towards physical activity. In their study of 500 patients, this approach led to over 60 percent of participants reporting their depression scores as half of the previous score. Participants also said that they felt less anxiety, fatigue, and pain. Researchers argued that similar programs could vastly improve the quality of life of many individuals diagnosed with cancer.

This study contributes greatly to CSC’s mission of providing emotional and social support to individuals with cancer. If you or someone you know is facing a cancer diagnosis, you’re not alone. Call the Cancer Support Helpline at 1-888-793-9355 Mon-Fri 9 am- 8 pm ET or explore our online support group, The Living Room.

If you have ever had any type of cancer, we also welcome you to participate in our Cancer Experience Registry, an ongoing research project that is helping us learn more about the full impact of cancer.

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The Power of Your Words

This week’s guest blogger is Susan Meyn, LPC, a support group facilitator for the Cancer Support Community’s online support groups. For more information on receiving online cancer support, click here

Susan Meyn, LPC Facilitator, Online Community at CSC

Susan Meyn, LPC
Facilitator, Online Community at CSC

“Simple”; “available”; “inexpensive”; “helpful”—these descriptors tell us a lot about why expressive writing has gained so much attention in recent years. It’s comforting for someone facing a difficult medical diagnosis to have tools available to help modulate the wide variety of emotions that come with it. One of the tools that can help is writing—specifically “expressive writing”. Research over the last 30 years supports the health benefits of writing about emotions. Of course, people have actually been writing about their personal experiences for thousands of years. Maybe they all knew something that our researchers now know with more certainty.

A little historical perspective: Journals and diaries have recorded personal life experiences for centuries. But, using writing as a therapeutic tool has a shorter life span—roughly over the last half century. Ira Profoff, PhD created the “Intensive Journal” in the 1960s. His method is aimed at personal development, and provides a way to deepen your relationship with yourself. His workshops continue to this day.

Another psychologist and researcher, James Pennebaker, made a surprising discovery in the 1980’s when he researched the benefits of talking about difficult life situations and how this made a difference in a person’s wellbeing. In his experiment he asked the participants to write for 15 minutes a day for 4 days in a row. The participants were broken into two groups—one group writing about a traumatic event, and the other group writing about something superficial. Regarding that first experiment, Pennebacker said, “To my surprise, those who wrote about their traumas needed less medical attention in the following months than they had previously, and many said the writing changed their lives. Ever since then I’ve been devoted to understanding the mysteries of emotional writing.” (from Preface of “Writing to Heal). His book, Opening Up details much of his early research, and another book, Writing to Heal provides step-by-step guidelines on how to do this kind of writing.

Pennebaker uses the terms “expressive writing” and “emotional writing” interchangeably. The emphasis is on using writing to express the emotions that go on when encountering difficult life events at a deeper level than ordinary discourse. It’s important to write for yourself, and possibly not even share what you wrote with others.

Now, more than 30 years after that initial study, there is continued interest in how writing can be used to heal. The Writing Cure is a book devoted to illuminating a wide range of studies on expressive writing. In cancer related studies, some have found that participants who practiced expressive writing had fewer physical symptoms and medical appointments at a three-month follow-up. Some studies show improved sleep after participating in the writing exercises. The studies continue.

Want to try your hand at expressive writing? Check out these simple guidelines to by clicking here.

The Cancer Support Community offers support groups that meet online in a chat room. While not the same as journal writing, it’s still an opportunity for participants to express their feelings as they talk to other cancer patients or caregivers in their groups. Our groups are professionally facilitated, helping to encourage participants to look deeper into their own feelings as they talk to others facing similar challenges. These groups, too, provide another kind of “expressive writing”.

I hope you’ll consider using this simple, available, inexpensive, and helpful tool for yourself.

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Shining the Light on MPNs

Members of CSC Atlanta shining the light on MPNs at their MPN awareness event

Members of CSC Atlanta shining the light on MPNs at their MPN awareness event

This month marks the recognition of ovarian cancer, prostate cancer, childhood cancer, leukemia, lymphoma and thyroid cancer. But, did you also know that tomorrow is day of awareness and recognition for a rarer group of cancers?

Each year, about 14,500 people are diagnosed with myeloproliferative neoplasms (MPNs), a group of rare blood cancers originating in bone marrow. Tomorrow, September 11, 2014 is recognized as MPN Awareness Day. Living with a rare cancer like an MPN comes with a unique set of challenges that make raising awareness, tomorrow and every day, crucial—so that no one faces cancer alone.

What exactly is an MPN?

An MPN is a disease in which the bone marrow creates too many red blood cells, platelets or certain white blood cells, which can cause complications such as anemia, infection or fatigue as the extra cells build up in the blood and/or bone marrow.  Types of MPNs include polycythemia vera, essential thrombocythemia and primary myelofibrosis.

Challenges of living with an MPN

  • Getting an accurate diagnosis can sometimes be difficult.
  • Unlike the other types of cancers being recognized this month, few people have heard of MPNs, causing those living with this diagnosis to feel isolated
  • People living with an MPN don’t always look sick
  • Treatment for MPNs is often just to “watch and wait” or is symptom management only.

What you can do

If you are impacted by an MPN, there are several things you can do to feel empowered and live well with your diagnosis.

  • Build a support network of friends and family you can count on.
  • Communicate your emotional and physical concerns to your health care team so they can help you find support.
  • Try to stay relaxed through stress-reducing activities such as yoga, meditation, light exercise or journaling.
  • Take care of yourself by eating well, and getting plenty of sleep and exercise.

Want to learn more about this rare group of cancers and how you can help raise awareness of the challenges of living with this diagnosis? Check out this week’s episode of Frankly Speaking About Cancer, and download this fact sheet on understanding MPNs. If you or a loved one is impacted by an MPN, you’re not alone.

Take part in our MPN Awareness activities on social media during the entire month of September by following #MPNAware2014.

Posted in Cancer Advocacy | 2 Comments