COA Advocacy News
 
June 30th, 2014
Rose Gerber Director of Communications and Patient Advocacy
 
Director's Report

It is exciting to share news of our continued national expansion and a renewed focus on prioritizing our relationships with our community cancer center members across the country. One of COA's key initiatives is preserving community cancer care and ensuring that cancer patients have continued access to their local cancer care team. As a cancer survivor, I know how important the continuity of care is to patients and their oncologists. CPAN is educating cancer survivors by
helping them understand how national oncology issues impact their local care. With consolidations and mergers, and privately-owned cancer clinics continuing to close across the United States, this lack of access to care is of deep concern to cancer patients and survivors.

Our CPAN state-based programs continue to develop and expand. In addition to our formal CPAN programs, we have cancer survivors and volunteers from throughout the United States. We recently launched a CPAN chapter in partnership with Ohio Hematology and Oncology (OHC), a practice with more than 16 sites in the greater Cincinnati area and Northern Kentucky. I would like
to thank Ronda Bowman, chief executive officer, OHC; Rich Schiano, director of marketing, OHC; Nadia Ali and Rick Payne, our CPAN volunteer leaders, for their contributions and support of our launch event. Visit the state-based section of our newsletter to meet some of our new supporters and learn more about our CPAN state-based programs.

Our April annual conference, held in Orlando, was a great success. I would like to thank our attendees and speakers. A special thank you to our CPAN medical co-chairs, Drs. Erin Dunbar and Hamidreza Sanatinia, for their presentations and commitment to patient advocacy. Visit the Advocate Events & Opportunities section of this newsletter to learn more and read some of the great conference feedback we received.

Along with my COA colleagues, I enjoyed our time at the American Society of Clinical Oncology (ASCO) meeting  in Chicago. COA members include cancer survivors, community cancer centers, and industry partners. We met with many of them and appreciate their support of community cancer care and our patient advocacy efforts.

I hope that you enjoy the newsletter, in addition to our patient advocacy updates. Educational features include insight into national oncology issues, the crisis in cancer care, the healthcare landscape, and 340B.  

 
Ted Okon
COA Executive Director
Report From Capitol Hill

 

 

The Crisis in Cancer CARE Threatens the CURE


It's always difficult to deliver bad news, but I'm someone who would rather hear it like it is rather than not hear it at all. So, here it is.

As I have written and publicly stated many times, we have a real cancer care crisis in this country! We are witnessing a consolidation of cancer care, with treatment clinics closing- especially in rural areas, and independent community cancer clinics merging into hospitals. This is creating access problems and resulting in higher costs for patients, insurers, and all taxpayers. As if that were not bad enough, the demand for cancer care is outstripping the number of oncologists. The estimate is that by 2020 we will be short the equivalent of one cancer patient in four not having an oncologist. Not to pile on, but our country is facing a shortage of low-cost generic anti-cancer and supportive drugs, such as sterile saline used to administer chemotherapy.
 
There are several specific reasons for these problems, but the overall cause is misguided public
policy. Translation-Washington, DC, is a mess! It's bad enough to have a crisis affecting the
care (including treatment) of cancer. Unfortunately, the crisis in the care will hurt our ability
to find "the cure" for cancer. Simply put, not having enough oncologists, treatment clinics, and
drugs will present real hurdles for the clinical research directed at finding the cure.
 
The good news is that everyone associated with the Community Oncology Alliance (COA) is
fighting hard to stop the crisis. More members of Congress, such as Congresswoman Renee
Ellmers (NC), Congresswoman Ed Whitfield (KY), and Congressman Mike Rogers (MI),
now understand the cancer care crisis and are working to stop it. Go to the COA website at
www.communityoncology.org (scroll down) to watch videos of members of Congress talking
about aspects of the crisis at a recent congressional hearing.

What can you do? Help us by reaching out to your members of Congress to make sure they
understand the crisis and how they can get involved in stopping it. Together, we can make a
difference if we are engaged. Cancer is a formidable foe, so we have to do everything to fight it.
We have to make sure that cancer care is affordable and accessible to all and, in the process, to
put our best foot forward to finding the cure. As those who have survived cancer understand, you
can't give up. We can't give up on the care to find the cure!
 
Bo Gamble Director of Practice Initiatives
Oncology News Updates
 
Eating Elephants

In this era of trying to redefine healthcare, particularly cancer care, we often hear the following: 
 
"I can't do this."

"I don't have the time or resources to do this."

Although both are reasonable responses, this does nothing to address the big, complicated and intimidating elephant in the room.....how to best reshape all of healthcare so that there is more emphasis on things that really matter - recognition and reward for providing the best possible care at the lowest possible cost.

What folks often forget are the basics about elephant eating:

* Never done alone - it takes a multi-talented team to negotiate the elephant to a point of cooperation. Those strong in character and perseverance will need to steer to keep from going "where we have always" gone. This also requires communication, coordination and collaboration. It requires all speaking the same language to navigate in a coordinated manner. And, although some think elephants are invisible, rarely can they be hidden behind for long periods of time. Lack of visibility implies that part of the team has been trampled in the effort - a bad thing.

* It takes time - The Elephant Diet is probably the last diet book you will ever need. Per wiki-answers, the average person eats 4.7 pounds of food per day and the African elephant weighs 15,000 pounds. Assuming this consumption rate, an average elephant would last the typical person 3,191 days or 8.74 years - a long time - especially when the average diet lasts 5.5 weeks. (This time commitment is of course lessened if others are involved - see above "Never done alone".)

* Expect obstacles - Elephant eating is not for the faint of heart. It often takes vision, leadership and patience. The process can be challenged by alarmists (i.e., the trunk like trumpet sound elephants make when threatened) or sharp spontaneous pains (aka the proverbial tusk) or huge misunderstandings. (If only the elephant's ear was proportional to its ability to hear and understand.) These are but a few of hurdles one can expect when taking this journey.

* They take up space - Whether visible or not - and regardless of our wishes, elephants do exist and some are larger than others. Those that are seen by the entire neighborhood also have the largest presence. It is somewhat ironic that elephants are smart, have a fairly good memory and live about 70 years - all characteristics of the entities that are assigned to managing them.

Healthcare, and particularly cancer care, has arrived at a good spot. The elephant is on our plate, the teams are in place, we have our assignments, and are prepared for hurdles. We are working together to change the historic and tired delivery model for cancer care replace it with ideas that are fresh, relevant and substantive and meaningful - an emphasis on quality, value and outcomes - one bite at a time. 

 

 

Mary Kruczynski Director of Policy Analysis

 

The History of the 340B Program

Is it Really Helping the Right People?

1992 to Present

Following is a brief tutorial on what was conceived to be a program to help the needy in America gain access to prescription medicines currently known as the 340B Program. As you will see, this noble attempt has morphed into a revenue generator for large institutions and is now impacting both the cost and continuity of high quality, affordable care for cancer patients nationwide. 
 
In 1992, Congress created the 340B program in an effort to make available needed prescription drugs for the vulnerable, uninsured and indigent patients in America. Hospitals and certain safety net providers (entities who provide care to the needy) participating in the 340B program received deep discounts from drug manufacturers as mandated by the federal government. In turn, these entities were supposed to extend those very discounts to needy patients.  
Unfortunately, as sometimes happens when the road is paved with good intentions, the Affordable Care Act expanded the 340B program, which broadened the type of entity that would qualify for these drug discounts to include cancer centers, new categories of hospitals and rural health centers. Further, Medicaid expansion increased the number of 340B eligible entities to the program. Now, on the surface, this may seem like a good thing and, in its purest form, it most certainly is. Unfortunately, instead of those hospitals and other qualifying entities reinvesting
those resources to providing services for said needy populations, statistics show that, in many cases, the opposite has occurred.

While there are certainly some 340B hospitals that provide considerable uncompensated care; as a whole, charity care represents 1% or less of patient costs at approximately one-quarter of all 340B hospitals. Charity care as a percent of patient costs is less than the national average of 3.3% for all hospitals; in essence, less than one third of 340B hospitals are providing more charity care than the average for all hospitals combined, including for-profit hospitals. To re-state it another way, 80% of the charity care in America is delivered by 20% of all 340B hospital.  
Now, the reader might be asking how this has happened. Well, when the program began, there were only about 90 hospitals that cared for a disproportionate share of indigent patients. Today, almost one third of all hospitals in this country are 340B qualified. And, while the number of eligible participants in the program has grown, the adequate structure for accountability and transparency have not. Mission control, in this case, The Office of Pharmacy Affairs, has not provided the
appropriate oversight, guidance and enforcement to make certain that a specified vulnerable population was, in fact, receiving benefit of those drug discounts. And, as a result, many are now questioning whether or not 340B is out of sync with its mission. 

To complicate matters even further, eligible hospitals are buying up private oncology practices in an effort to achieve even more revenue from purchasing expensive cancer drugs at discounted rates, yet billing the Medicare system and private payers, as though they had paid the full cost for those drugs. Acquiring even one oncologist from a private practice into a hospital outpatient setting nets that 340B institution more than $1 million dollars in additional profit. To date, COA has tracked the secession of private cancer clinics to the hospital outpatient department and the numbers are startling. Many rural clinics have closed. Oncologists approaching retirement age have accelerated that process, retiring earlier than anticipated. Hospitals are forcing practices to become employees, threatening to hire oncologists from elsewhere around the country if they refuse.

A recent COA commissioned study done by Berkeley Research Group revealed that both the Medicare system and the Medicare beneficiaries themselves incurred additional costs of $196.55 million for chemotherapy claims attributable to the 86 340B hospitals in the study who had acquired private, physician-based community oncology offices. There was an estimated increase in Medicare and Medicare beneficiary payments of $167.28 million. Finally, between 2009 and 2012,
Medicare reimbursed these same 86 340B hospitals $23.29 million dollars more and beneficiaries and other payers another $4.05 million dollars more for cancer claims attributable to physician based practice acquisitions, than if the service had been billed as a private physician office claim. In short, care provided in the private practice setting is cheaper than that delivered in the hospital outpatient department, yet the hospital, while providing similar care, derives increased revenue for the billing of drugs acquired at a marked discount under the 340B program.   
Now that you are armed with the knowledge to distinguish a private practice setting from a hospital outpatient setting, and can understand the benefits associated with the 340B program for participating hospitals, we would like you to think about the following questions. If you are so inclined, we would be most grateful for your feedback. In the end, it is yourself that is the most affected by the closing of your treating oncologists offices.

* Have you been told by your doctor that you will need to receive your treatment in the hospital outpatient setting and not at your usual site of care?

If so, which hospital?

* Has your doctor told you that his/her practice may be closing in the near future? If so, have you been referred to a hospital to receive your care?

* Have you seen an increase in transportation costs in order to complete your treatment regimen?

* Has a family member or caregiver had to accompany you to treatment? Have you been forced to spend the night after receiving your treatment?

* If you have been asked to receive your treatment in a hospital outpatient setting, have you experienced increased wait times? Has your quality of life been affected as a result?

* Has your out-of-pocket responsibility increased, even though you haven't switched your insurance?

* Have you been asked to travel to multiple sites to receive care? If so, have you incurred multiple out-of-pocket cost responsibilities?

* Has your treatment plan changed as a result of being asked to receive care in the hospital outpatient setting?

* Have you been required to receive care from new doctors/nurses/social workers with whom you aren't familiar?

* Are you being directed to fill your prescriptions at certain pharmacies? Are those pharmacies easily accessible? Have you experienced changes in cost-sharing requirements?

* If you have been admitted to the hospital, have you been transferred to an outpatient infusion center to receive your treatment?

We ask you to think about these questions and reach out to us if you would like to chat. We are continually being asked to provide evidence that patient care is being impacted. As COA's policy director, I would be honored to speak with you and can be reached at 215-630-5019 or via email at maryk@coacancer.org 

CPAN State Reports

Florida
 
Florida Cancer Specialists

Florida Cancer Specialists (FCS) continues to be one of our strongest partners. We greatly value their support of COA's Virtual Hill Day on May 7 and 8 as well as other COA initiatives and our patient advocacy efforts. I would like to thank FCS' Dr. Michael Diaz and Shelly Glenn, chief marketing and sales officer, for their ongoing support. I would also like to welcome our newest CPAN FCS leader, Sara Boses, RN, BSN, integrative oncology coordinator. In addition to our FCS-based efforts, we have many engaged advocates throughout the state. I value their contributions as well.

 

Dr. Michael Diaz
Sara Boses, RN, BSN
Shelly Glenn, Chief Marketing and Sales Officer











Georgia

Augusta Oncology Associates 
 
Augusta Oncology, with two sites, will be our new CPAN practice-based chapter. I would like to thank Dr. Miriam Atkins for her continued support of COA's patient advocacy efforts. I would also like to welcome Michelle Burns, a cancer survivor, who will lead our efforts at Augusta Oncology in the Augusta area.
 
Dr. Miriam Atkins
Michelle Burns
 
 
 
 
 

 

 

 

 

 

 

Northwest Georgia Oncology Centers, PC News 

 

By Susanne Johnson-Berns

 

The Georgia Chapter began January 2014 by identifying participants for the 2014 Florida COA/ CPAN Conference. It was our goal to bring as many new advocates as possible, as well as offer scholarships for seasoned advocates who did not previously have the opportunity to attend a conference. In coordination with Greyhound, our transportation sponsor since 2012, Georgia was able to send 28 participants to the conference The conference was a huge success. 

 

On May 7 and 8, we participated in the virtual Capitol Hill Day-a fabulous exercise for the new advocates. For nearly a week prior to this day, we educated and trained the advocates on how to contact their representatives and for which specific items we were seeking support. We set role-play sessions to help the advocates feel comfortable in reaching out to the Washington office of their respected representatives. At the forefront of our efforts stood HR 1416-the Cancer Patient Protection Act, by Renee Ellmers, which will prevent sequestration cuts from harming cancer patients. At the beginning of Virtual Hill day, 110 members had signed on in support of HR 1416. Eight of them were Georgians. Over the course of two days, Georgia advocates sent nearly 80 e-mails; those who felt comfortable followed up with phone calls to their representative's Washington office.

 

At the end of the two-day Virtual Capitol Hill Day efforts, 13 additional representatives supported the bill with their signatures; two of them were from Georgia. This brings the total of Georgia supporters to 10. We felt that our participation was a great success-not only did we gain additional supporters, we also gained confidence and witnessed the importance and the success of the combined team efforts of the entire national CPAN advocate teams. Moving forward, we are planning our next advocacy meeting to take place in August. Part of our agenda will be planning our participation as a team in a local cancer walk held in Marietta in October.

 

  

New York

 

Broome Oncology

Cicely Wang, Patient Advocate

 

I am happy to announce our newest CPAN supporter, Broome Oncology, a practice with sites in Binghamton and Johnson City, NY. I would like to thank Melinda Rigo, RN, executive director, for her support of our patient advocacy efforts as well as welcome Cicely Wang, who will be our CPAN Broome Oncology leader. 

 

 

 

 

 

 

North Shore Hematology Oncology Associates, PC

    

NY-CPAN Advocates attend COA-CPAN National Advocacy Conference, April, 2014 Orlando, Florida

 

By Michael Murray and Nicole Cardaci 

 

 

North Shore Hematology Oncology Associates, PC (NSHOA), from Long Island, NY recently attended the Community Oncology Alliance annual conference. We were blessed to have so many patients joins us in support of patient advocacy.


The level of participation and sharing of their stories was an inspiration to all in attendance. Patient advocacy is vital to the future of community based cancer care and a wonderful way for current and former patients to find support. Advocates spoke of their individual experiences in the hope that others may find inspiration and strength. Our patients came back from the conference reinvigorated by their experience and are more motivated than ever to continue advocacy work. 

 

Our CPAN advocates motivation continued after the conference. On May 16th, our group met with Senator Lee Zeldin to discuss the importance of community oncology. As cancer survivors they spoke to the benefits of receiving care in a community oncology practice, and about how being treated in a community setting changed their lives dramatically for the better. We encourage all to get involved; whether a survivor, patient or caregiver at coaAdvocacy.org or learn more at nshoa.com.

 

 
Ohio
 
Ohio Hematology Care: New CPAN OHIO State Chapter

By 
Rick Payne

Our first Ohio CPAN meeting was a great success! The
meeting space was provided by Oncology Hematology Care (OHC) in the main conference room of its main office. Nadia Ali, chapter co-president, and I attached balloons to the OHC sign to welcome the new advocates. The pizza arrived on time. After everyone grabbed a few slices, the meeting began a few minutes after 6 p.m. The first speaker was Ronda Bowman, the chief executive officer of OHC. In her presentation, she described facilities and services that OHC provides for cancer patients. She also described OHC's early adoption of the Oncology Medical Home Program, one of COA's key initiatives. After Ronda finished her presentation, Rose Gerber, director of communications and patient advocacy at COA, proceeded to give an overview of COA and CPAN. She shared some personal experiences with breast cancer as well. After Rose's presentation, we took the floor to describe the specific vision and plans for the Ohio chapter. We talked about our personal experiences with cancer as well as our involvement in previous COA conferences. After the presentations, we opened up the floor for questions. The attendees were genuinely interested in participating in CPAN. There were lots of questions pertaining to future meetings and how we plan to move forward.

 

 

 


CPAN Advocacy Partner News

CPAN is interested in collaborating with local and national cancer advocacy groups. Additionally, we want to work with industry partners. To learn more or to share your ideas, contact COA Director of Communications and Patient Advocacy, Rose Gerber, roseg@coacancer.org 

Partnerships & Corporate Member Opportunities

COA and CPAN provide great opportunities for interested patient advocacy organizations and corporate members. 

 

To learn more about patient advocacy and collaboration opportunities, contact:

 

Rose Gerber 

COA Director of Communications and Patient Advocacy 

roseg@coacancer.org 

 

 

To learn more about COA's Administrators Network (CAN) and 

COA's Oncology Medical Home Initiative, contact:

 

Bo Gamble 

COA's Director of Practice Initiatives 

bgamble@coacancer.org  

 

 

To learn more about COA's corporate membership opportunities contact:

 

Mary Kruczynski, 

COA's Director of Policy Analysis

maryk@coacancer.org  

 

 

For general COA inquiries, contact:

 

Tracey Banks 

COA Executive Assistant

tbanks@coacancer.org 

 

 
Advocate Events & Opportunities

Our April 2014 conference held at Walt Disney World Resort in Orlando was a great success. The Patient Advocacy program track has become a fully integrated and equal part of COA's annual conference. Originally intended for cancer survivors, the advocacy track has garnered interest and attendance from all members of the cancer community-making the patient advocacy program even stronger. The Patient Advocacy program track included 13 CPAN sessions, four joint sessions (with the clinical and business track), and presentations by 21 speakers. Attendees came from across the United States. Multiple educational topics included How to Lobby Congress & Legislative Updates, Bringing Cancer Care Advocacy Into Your Practice, and Understanding the Business Issues of Providing Quality Cancer Care.

We received wonderful feedback from our attendees.

Here is a sampling of what our CPAN 2014 conference attendees had to say when asked:

What did you enjoy most about the conference?
 

 First conference, loved it, learned a lot. Thank you all.

 The various wide spectrum of topics on the agenda.

 Learning that I really do have a voice

 The opportunity to get information and resources to use in my private advocacy practice

 Networking. Input from the patients and this journey. Understanding the challenges for community-based practices and how I can support and advocate for them to remain in practice

 Interacting and hearing from physicians, lobbyists, and all aspects of cancer care.

 Hearing the personal stories of the survivors. How oncology nurses use evidence based practices in patient navigation.

 The incorporation of the impact of advocates and how they can make major impacts in policies and health care.

 Hearing about issues that have unintended consequences for patients.

 The oncologist discussion regarding the many problems they face with getting permission to provide treatment for patients.

 Love bringing all parties to the table - doctors, payers, nurses, advocates, patients, diagnostics, Pharma, makes for lively talks.

 

 



About The Community Oncology Alliance (COA)  
& COA's Patient Advocacy Network (CPAN)


The Community Oncology Alliance (COA) was established in 2003 to advocate on behalf of cancer patients and their oncologists.   


The majority of cancer patients are treated in a community 

 cancer clinic. Other types of care environments include state

 and regional hospitals and academic based cancer centers.

  

COA was founded by community oncologists in response to the Medicare Modernization Act of 2003, which planned cuts to oncologist reimbursement, a move that directly and negatively impacts patient care. COA members are community cancer centers, oncologists, nurses, practice administrators, and pharmaceutical partners. The COA Patient Advocacy Network (CPAN)  was created to include the patient voice. 


Rose Gerber
Director of Communications
& Patient Advocacy
roseg@coacancer.org

We appreciate your feedback and suggestions. Thank you!

Visit Us On Facebook, Twitter, & YouTube

Like us on Facebook    Follow us on Twitter    View our videos on YouTube