Use this tool to help choose health insurance

Cancer Insurance Checklist_Banner Ad_FINALOpen enrollment for the health insurance marketplaces begins on November 15th. From then until February 15th, you may buy health coverage for 2015 on your state’s marketplace by visiting HealthCare.gov or CuidadoDeSalud.gov.

If you have cancer, a history of cancer, or a risk of cancer, the process of shopping for health insurance may be overwhelming. To help, the Cancer Support Community and a group of advocacy organizations created the Cancer Insurance Checklist, which is newly updated for the 2015 open enrollment period. You may use the Checklist to easily compare plans to decide which insurance is best for your needs and your budget.

By printing and filling out the Checklist for each plan that is being considered, you can make a comparison by taking your own personal medical needs, coverage options and costs into account. The Checklist can be helpful not only when you are comparing insurance plans yourself, but also when you are discussing your needs with your navigator, marketplace representative or health care provider.

The Checklist is available in English and in Spanish at www.CancerInsuranceChecklist.org or www.SegurosMedicosYCancer.org. These websites also provide helpful links to other resources related to cancer and insurance in English and Spanish.

We urge you to use and share this helpful new tool with anyone who may need it.  And if you need any assistance with cancer related issues, please call CSC’s Helpline at 1-888-793-9355.

 

Posted in Cancer Policy Institute, Uncategorized | Leave a comment

Delivering on Patient-Centered Care

CER report back coverPatient centered care, i.e. putting the patient at the center of his or her care. I think about this a lot. What does it really mean? What is the disconnect? Is it achievable? How do we prepare patients and their families? How do we prepare health care professionals?

I have been thinking about this more due to our recent release of pivotal information from the Cancer Experience Registry. The October 22 release of Elevating the Patient Voice looks at the cancer experience through the lens of 3,500 patients with striking results.

But first, is this issue. There is no doubt that we all are thinking about the patient and their families and, in that sense, placing them at the center of care. As a community, we talk to and about them, make decisions that impact them and even try to predict how they will feel. As I recently heard a physician say, “It is our duty to protect our patients.” Now, please do not misinterpret my thinking. I am thrilled that we are protective of our patients, as many are in the most vulnerable state of their lives. But in protecting patients rather than engaging patients, we may be compounding that vulnerability and moving patients from the center of care to hanging on to the caboose of a very rapidly moving train.

As one example, the Registry data shows that up to 65 percent of patients report feeling unprepared to make a treatment decision. 65 percent— that’s 2 out of every 3 patients. Of the 4,563 people who will receive a cancer diagnosis today, up to 2,965 will not be prepared to make a treatment decision. Yet, these same patients have to live with the outcomes of their care. Some are very positive and may result in better patient outcomes, including being cured. Some however, are not so positive and can exist with the patient and family for years to come. Patients in the Registry report missing social events (48%), depleting their savings (36%) and altering grocery expenses (37%) to pay for their care. They report short and long-term side effects that include up to 70% reporting significant levels of fatigue. And, they report impact to their ability to work (46%). Patients are living with the consequences of their cancer care and they deserve to have more of an understanding and voice in the process.

The good news is that when engaged, even in a one-time treatment decision counseling session, patients report being more satisfied with the interaction with their health care professional and report lower levels of decisional regret. And, as one physician reported, “they bring me better questions, not more questions.”

The Institute of Medicine report (Ensuring Quality Cancer Care) was published in 1999 and noted engaging patients as a key element in quality cancer care. 15 years ago. Since 1999, much as been done to advance this goal of engaging patients. Three more IOM reports, the 2012 Commission on Cancer Patient-Centered Standards, the American Society of Clinical Oncology Quality Oncology Practice Initiative, the oncology Medical Home models and others are trying. But how can we get there quicker and with more accuracy? Engage patients.

While it sounds simple to implement, it is not. Imagine a world where patients sit face-to-face with a care provider who has time to and is reimbursed for arriving at a care decision with the full understanding of the patient. Imagine a world where advisory panels that make major decisions on behalf of patients actually have people living with the disease informing their thinking. Imagine what could be accomplished in clinical research if patients were aware of their options. Imagine the result of shared-decision making and care planning from the point of diagnosis on overall patient outcomes, including patient dignity.

This level of engagement is within our reach. Now let’s all get busy, we’ve got important work to do.

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How Does Exercise Combat Depression?

Participants enjoying an exercise class at Cancer Support Community Greater Philadelphia

Participants enjoying an exercise class at Cancer Support Community Greater Philadelphia

A cancer diagnosis can be difficult to handle. Cancer affects your physical body as well as your attitudes, thoughts or feelings. You may experience a range of emotions like fear, anger, sadness and helplessness. When these feelings interfere with daily normal functions you may be experiencing anxiety or depression. It is important to talk to your health care team about these feelings so you can discuss ways to cope with these emotions. Some people participate in support groups or individual counseling while others talk with family and friends.

Another beneficial coping strategy people turn to is exercise. Daily exercise has been shown to improve symptoms of depression, release muscle tension and reduce levels of cortisol,–a stress hormone. When you exercise, chemicals called endorphins are produced in the brain, spinal cord and many other parts of the body. Endorphins can decrease your awareness of pain and trigger positive feelings in the body. Additionally, research shows that physical activity improves the quality of life for people in active cancer treatment.

Exercise does not have to be strenuous to be effective. The following are some examples of ways to stay active. Be sure to talk to your doctor before participating in any form of physical activity. Some simple and effective forms of exercise are:

  • Walking
  • Gardening or cleaning
  • Light jogging
  • Yoga
  • Tai Chi
  • Dance
  • Tennis
  • Swimming
  • Golf

There are also many other benefits to exercise. Doctors often recommend staying as active as possible. Exercise not only combats depression, but it can also:

  • Improve sleep
  • Reduce stress
  • Improve self-esteem
  • Strengthen the heart
  • Increase energy levels
  • Lower blood pressure
  • Improve muscle tone and strength
  • Strengthen and build bones
  • Help reduce body fat
  • Reduce the risk of cancer recurrence
  • Improve quality of life

The Cancer Support Community offers resources to help you cope and live healthy with cancer. Click here for more information on emotional health and physical activity .

If you have questions or would like more information you can call CSC’s toll free Cancer Support Helpline® at 1-888-793-9355 to speak with a call counselor who can answer any question you may have.

Posted in Cancer Support, Living with Cancer | Leave a comment

Elevating the Patient Voice: 3 things we learned from Cancer Experience Registry data

“I cried all the time. I was so anxious and afraid. It was like nothing I had ever experienced. It made a huge difference when I told my manager what was happening and he told me that he was a melanoma survivor. He said my job was safe and I should do whatever I needed to take care of my cancer. I signed up for the Cancer Experience Registry to give back to other women going through what I did, let them know they can get through it” Linda P. – Cancer Experience Registry member

“I cried all the time. I was so anxious and afraid. It was like nothing I had ever experienced. It made a huge difference when I told my manager what was happening and he told me that he was a melanoma survivor. He said my job was safe and I should do whatever I needed to take care of my cancer. I signed up for the Cancer Experience Registry to give back to other women going through what I did, let them know they can get through it”
Linda P. – Cancer Experience Registry member

Since its launch in March 2013, the Cancer Support Community has asked people impacted by any type or stage of cancer to share the issues and concerns that defined their cancer journey with the Cancer Experience Registry. As of today, more than 7,000 participants have done exactly that, and have helped identify the social, emotional and financial needs of people living with cancer.

Today, the Cancer Support Community is excited to announce that the index report of these findings, Elevating the Patient Voice, is now available online! The Cancer Support Community will be commemorating the release of the first year findings at a presentation and reception at CSC’s Research and Training Institute in Philadelphia, PA. The event features Keynote Speaker Peter Bach, MD of Memorial Sloan-Kettering Cancer Center, who has shared his experience as a physician and caregiver for his wife after her diagnosis, treatment and death from cancer.

What have we learned from the Registry findings so far?

  1. There are significant challenges regarding the cost of cancer care. About one-third of patients  reported having to reduce their grocery expenses, and one-third  have depleted their savings due to cancer-related costs.
  2. Many people are concerned about long-term side effects. Nearly half (42 percent) of patients are seriously concerned about nutrition, and about a third (32 percent and 34 percent, respectively) are seriously concerned about fatigue and exercise.
  3. There is an ongoing need for social and emotional support. 37 percent of patients have serious worries about the future, and 35 percent have serious financial worries.

CER report coverHow will the Registry help people impacted by cancer?

The Cancer Experience Registry is the first of its kind, and it consists of items that measure the total cancer experience on the person diagnosed as well as his or her family. After completing the profile and questionnaire, members can compare their responses with others in the community and be connected to online educational content relevant to their concerns and interests.

“We hear over and over that patients feel uncomfortable bringing up their issues with their doctors. They don’t want to bother them, or be seen as a ‘bad patient.’ We put a lot of effort into asking questions that are sensitive to our population—and our respondents often tell us, ‘no one ever asked me that before,’” said Joanne Buzaglo, Ph.D., VP of Research and Training at CSC.

More highlights from the Registry data and more patient stories can be found in Elevating the Patient Voice, and for insights and updates from the event follow CSC on Twitter @CancerSupportCM.

Anyone who has ever been diagnosed by cancer at any time is invited and encouraged to join the Cancer Experience Registry. Click here to get started.

Posted in Cancer Research, CSC News | Leave a comment

RECAP: 4 things you should know about metastatic breast cancer

mbc photo

October, as most people know, is widely recognized as breast cancer awareness month. As the official breast cancer awareness month color, we see pink nearly everywhere we go this month to help raise awareness for this disease, which is diagnosed in about 1 in 8 women and about 1 in 1,000 men every year in the United States. However, what a lot of people may not know is that October 13 was Metastatic Breast Cancer Awareness Day. About 155,000 people are currently estimated to be living with metastatic or stage 4 breast cancer, meaning the cancer has spread to other parts of the body.

Earlier this month, during an episode of Frankly Speaking About Cancer, Kim Thiboldeaux, President and CEO of the Cancer Support Community, talked with Shirley Mertz, Board President of the Metastatic Breast Cancer Network (MBCN), Stacy Lewis, Chief Program Officer and Deputy Chief Executive of the Young Survival Coalition and Khadijah Carter, who was diagnosed with metastatic breast cancer in 2010 and has used her story to inspire others.

What is metastatic breast cancer?

Shirley: Metastatic breast cancer means that cells, cancer cells, in the breast have travelled to other parts of the body, usually the bone lungs, liver or brain. The cells get to other parts of the body by way of our blood stream or lymph nodes. We don’t know exactly why, but it does happen. This disease is different than early stage disease; early stage disease is confined to the breast. Our challenge for those of us who live with metastatic breast cancer is that our disease is incurable. People die from metastatic breast cancer. Unlike early stage breast cancer, where the treatment aim is to cure the person of their disease. Right now there is no cure for metastatic breast cancer. The goal is to try to extend our life as long as possible, while helping us live the highest quality of life that we can.

How is metastatic breast cancer treated versus early stages of breast cancer?

Shirley: During the month of October, many people get the idea that breast cancer is one disease. It’s really many diseases, both at the early stage and at the metastatic or advanced stage. Because there are different subtypes of metastatic breast cancer, there are different treatments. The most common thing I can say that makes them all similar is that they are all aimed at what is making the breast cancer grow. Different subtypes receive different treatments. For metastatic breast cancer patients, they are in constant treatment. For example in my case, I have been in treatment for eleven years. There is just no end because we don’t know how to cure it.

How is metastatic breast cancer diagnosed?

Khadijah: Metastatic disease is usually diagnosed when breast cancer has reoccurred months or years after treatment for early stage breast cancer. Approximately, six to ten percent of people are initially diagnosed with metastatic breast cancer. If a woman exhibits some symptoms after she has been treated with early stage breast cancer–for me I had a persistent cough. I went to my doctor and they conducted a chest x-ray, and they saw multiple tumors and a blood clot. That’s when I had a biopsy and when he determined that I had metastatic disease at that point.

Are there any risk factors for this diagnosis?

Stacy: I think what we know from having both Shirley and Khadijah as part of this great call is that it can, unfortunately, happen at any age. While less young women are diagnosed with breast cancer as well as metastatic breast cancer, the reality is that, unfortunately, younger women are dying at an increased rate when compared to the general breast cancer population. In brief, when you look at what they call the five-year survival rate, the general breast cancer population is doing slightly better than the population of young women diagnosed with breast cancer. Age is not a barrier, and too many women are being diagnosed with metastatic breast cancer.

 

Click here to listen to the full episode to learn more about the unique issues facing people impacted by metastatic breast cancer,  the importance of raising awareness of this disease and much more. For more information about metastatic breast cancer click here, and check out Frankly Speaking About Cancer: Metastatic Breast Cancer.  If you or someone you love is impacted by this diagnosis and is in need of support or resources call the Cancer Support Helpline at 1-888-793-9355, available Monday-Friday, 9 a.m.-8 p.m.

About Young Survival Coalition

Young Survival Coalition (YSC) is a global organization dedicated to the issues facing young women who have been diagnosed with breast cancer. YSC provides information, education and resources for women, from diagnosis to long-term survivorship. YSC allows those impacted by any stage of breast cancer to connect to others through online community boards, in-person support groups or one-on-one peer support.

About Metastatic Breast Cancer Network

Metastatic Breast Cancer Network (MBCN) is a national patient-led advocacy organization dedicated to the unique concnerns of the women and men living with metastatic breast cancer. The mission of MBCN is to empower people living with this disease to be their own best advocate by providing education and information on treatments and ways to cope with metastatic breast cancer—physically, socially and emotionally.

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