CSC at the Gerontological Society of America Conference: Part 2

Posted on November 16, 2012 by Chris Gayer

Hello again from the 65th Annual Gerontological Society of America (GSA) conference in San Diego! Moments ago, I presented a late-breaking poster on behalf of CSC and all of the great work which has gone into CancerSupportSource—our 25-item psychosocial distress screening, referral and follow-up program.

The poster presented age differences with respect to: 1) areas of reported distress, 2) areas in which assistance was requested, 3) type of assistance requested, and 4) risk for clinical depression. The results clearly demonstrated age differences in the cancer survivorship experience. Adults age 45-54 were overwhelmingly more distressed than those 65+, were more likely to request assistance for treating their distress and were nearly 4 times more likely to be at risk for clinical depression.

Many people stopped by the poster and expressed their interest in CancerSupportSource including researchers, administrators, advocates and medical professionals. People were especially interested in the Research and Training Institute and our ability to conduct novel community based research through CSC’s grassroots affiliate network.

I am meetings a lot of great people, and thoroughly enjoying my time at the GSA conferences thus far.  I will try to check in once more following my next poster presentation.

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CSC at the Gerontological Society of America Conference: Part 1

Posted on November 15, 2012 by Chris Gayer

Greetings from the 65th Annual Gerontological Society of America (GSA) conference in San Diego!  I have just arrived at the San Diego Convention Center for my first day of conferencing, amid beautiful Southern California weather and the buzz of exciting new research and ideas.

The theme of this year’s conference is, “Charting New Frontiers in Aging.”  According to the GSA—charting implies connections, which help us move beyond our personal insights and investigations to achieve a deeper and more meaningful understanding of aging and its implications.  Within the context of CSC’s mission to directly serve those impacted by cancer, the marked increase in cancer risk with increasing age, and the demographic trends leading to the rapid “graying” of our nation, there are few research areas more relevant  for CSC.

I am looking forward to a stimulating and productive conference, and will check in with several additional posts throughout my time at GSA.

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Flights for Cancer Patients at No Cost

Posted on November 15, 2012 by Robyn Stoller

Getting ready to board our Corporate Angels flight (pictured: Alan, Me & Alan’s sister, Debby)

Before our cancer “experience”, I had absolutely no idea there existed organizations that fly cancer patients to and from long distance treatments FREE of charge.  Fortunately, we learned about the Corporate Angel Network when we needed this service most…. they flew us from Houston, TX to Washington, DC (courtesy of Verizon Wireless’ corporate jet- THANK YOU Verizon!) after Alan had brain surgery at MD Anderson.

Here’s the dealio (as my daughter always says)… To get the best care possible, sometimes cancer patients need to travel to treatment facilities that are far away from their homes.  Traveling long distance for cancer treatments can be both exhausting and cost-prohibitive, potentially eliminating available treatments options for some patients. To help alleviate this burden, there are organizations who offer FREE air travel services for cancer patients, many on private jets.

Most groups who offer this free travel assistance require that the patient be ambulatory (able to walk and get into/out of the plane with little or no assistance) and be medically stable as the pilots are not able to provide any medical assistance. While some groups require proof of financial need, others do not.  Typically, patients are allowed to be accompanied by one family member or support person.

The National Patient Travel Center (NPTC) may be the best place to start when searching for free flights.  They will connect cancer patients to available flight resources. There is no charge for this referral service.  Of course, you can also choose to call each organization directly if you like.

Some of the organizations that fly cancer patients FREE of charge are listed below:

Angel Flight- There are several different Angel Flight groups based on geographical location. Click HERE to locate the Angel Flight organization that serves your state.  

Angel Flight at NIH- Flies cancer patients involved in research studies and clinical trials to cancer centers throughout the US (not just to/from NIH).

Air Compassion for Veterans- Flies wounded warriors & veterans seeking treatment.

Children’s Flight of Hope- Serves pediatric cancer patients only.  

Corporate Angel Network- Proof of financial need is not required.  Has access to both private jets and unused seats on corporate jets. They are AMAZING!!!

FOOTPRINTS in the Sky-  In most cases you are allowed to bring up to 3 family members. If no immediate family is available, you may bring one non-family member for assistance.

Hope Flight Foundation- Serves pediatric patients living in California, Nevada, and Oregon. 

Houston Ground Angels-   Provides both air and ground transportation to patients who fly into or out of Houston, Texas.

Lifeline Pilots-  Works with cancer patients of any age.  Also transports children with life-threatening illnesses to special camps, fulfilling patient’s last wishes to visit home or family and transporting immediate family members to provide support for someone in a distant hospital for recovery.

Mercy Medical Airlift- Coordinates free commercial airline tickets (using donated frequent flyer mileage on US Air, Delta & United Airlines) AND negotiates discounted air ambulance service for individuals and families who are in need of this special service. (***there are no FREE air ambulance services anywhere)

Miracle Flights for Kids- Serves pediatric cancer patients only.

Patient Airlift Service (PALS)- Covers flights in the entire northeast United States as far west as Ohio and as far south as Virginia.

Raquel’s Wings for Life- In addition to free flights, Raquel’s Wings for Life  also offers complimentary ground transportation to & from the airport if needed.

To find a more complete listing of organizations that provide free air transportation to cancer patients, check out Air Care Alliance.  (Please note:  The Air Care Alliance lists pet transport, medical transport & humanitarian aid services as well).

Posted in Guest Blogger: Robyn Stoller, Living with Cancer, Treatment | 1 Comment

Support for Patients and Caregivers

Posted on November 12, 2012 by Affiliate Guest Blogger

by Bonnie Dockham, Program Director at Cancer Support Community Greater Ann Arbor

CSC Greater Ann Arbor has partnered with the University of Michigan in a unique program that offers support to patients and their caregivers.

Acting as a caregiver can take many forms. It is not necessarily providing physical care such as lifting and dressing like so many tend to believe. Caregiving frequently refers to providing emotional support and love. It can mean providing transportation, meals and maybe financial assistance. No matter the type of care, it typically means that a lot of changes are occurring for both the person receiving and the person providing care.

A study published by the American Cancer Society in 2008 discussed the relationship between caregiving and mental health. The report showed that caregivers who have emotional and problem orientated support were better able to cope with a loved one’s cancer and the pressures of caregiving.  Individuals who reported skills in seeking out information also dealt with caregiving with greater ease. These skills are not innate and often times adults need assistance in further developing them. This is where caregiving support programs at the Cancer Support Community come into play.

As a local affiliate of the Cancer Support Community, CSC Greater Ann Arbor has partnered with the University of Michigan to provide a unique program to people dealing with a cancer diagnosis and one care provider. FOCUS is a 6 week series that gathers patients and loved ones for a discussion group that is meant to increase communication and improve coping for both the patient and caregiver. This program was offered as part of a pilot study and results of its effectiveness will be released after the first of the year.

In the meantime, there are a few things that caregivers should always remember. Don’t forget to care about yourself! Allow yourself to accept help from others and give yourself permission to do something fun. Whether it is a simple hug or a night out with loved ones, you deserve it. Reaching out to the health care team or CSC in your community is important too. Connecting with others, asking questions and obtaining support is often just a phone call away. Reach out. It will make you a better caregiver and keep you healthier.

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Worried About Treatment Costs? You Are Not Alone

Posted on October 31, 2012 by Linda House

by Linda House and Lauren Barnes, Senior Vice President, Avalere

Until recently, patients being treated for cancer primarily received cancer drugs through an intravenous infusion, which meant they had to receive treatment in an oncology office or a medical setting. Anti-cancer medications that can be taken by mouth are a relatively new type of cancer treatment. Because these medications can be taken at home, they can save patients valuable time and energy. Yet research has shown not all patients complete their treatment regimens, which can reduce a treatment’s effectiveness.

In 2010, Avalere Health conducted an analysis on behalf of the Community Oncology Alliance to get a better understanding of what issues prevent patients from adhering to oral anti-cancer therapy. Our study found patients were primarily abandoning treatment due to two key factors: high costs and higher prescription activity.

Let’s first explore the high costs associated with oral therapies.  Because these options are covered differently than infusions by insurers, sometimes patients have to enter into a cost-sharing situation, meaning the cost for treatment is ‘shared’ by both the patient and the insurance company.  Think about going to the pharmacy and the amount one might pay to pick up a prescription. The Avalere study found the situation where patients having to ‘share’ over $500 were four times more likely to stop therapy than patients whose ‘share’ was $100 or less. Patients covered by Medicare, which tends to require higher patient cost-sharing for these drugs than most commercial insurance plans, were also more likely to abandon treatment.

The second issue deals with higher prescription activity.  This speaks to the number of prescriptions a patient has to fill.  It should be noted that patients who fill more than five prescriptions for non-cancer medicines in a month abandoned treatment at a higher rate than patients with no pharmaceutical claims. This finding raises a number of questions about underlying causes including cost of therapy, ability to secure required resources, patients feeling overwhelmed, etc.

If you find yourself needing support as you face these and other issues, reach out to others as you are making your initial treatment decision and if you find yourself in need of assistance as you move through your cancer journey.  The Cancer Support Community has free resources specific to these needs in their Frankly Speaking About Cancer: Cost of Care program and also their Open to Options treatment decision counseling program.  Additionally, your local pharmacist and/or patient navigator can help patients identify ways to save money without sacrificing quality of care, including helping patients identify and apply to for prescription assistance programs.

For more information on this research project and its funding, please visit www.communityoncology.org/oral-oncolytics-study-funding-information. For more information on Avalere Health, go to www.avalerehealth.net.

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