Category Archives: Advocacy

Why I’m Going to Capitol Hill On March 29

By Virginia Vaitones, MSW, OSW-C

U.S. CapitolACCC Capitol Hill Day 2017 happens to coincide with national Social Work Month, which the National Association of Social Workers is marking with theme Social Workers Stand Up.  As an oncology social worker, this year I’m putting on my patient advocate’s hat, standing up, and going to Capitol Hill to share with legislators the stories of how my patients are being impacting by worry and uncertainty about how  changes to the Affordable Care Act and the Medicaid program may affect their insurance coverage and access  to care.

My home state of Maine has the distinction of having the oldest population in the country per capita and Knox County, where I live and work, has the oldest population in the state.  Many of my patients who are on Medicare also have MaineCare (Maine’s Medicaid program) as their secondary insurance.  The current proposed changes to how the federal government supports states with Medicaid funding will have a tremendous impact on my patients.

Besides the elderly population that I need to advocate for, the proposed cuts and changes in payment will have an impact on my younger patients who become disabled with their cancer diagnosis and depend on Medicaid to cover the cost of their cancer treatments.  As a patient advocate, I will be standing up for these patients as well.

My advocacy skills also are needed to bring the stories of how cancer impacts parents, small business owners, and working adults with a cancer diagnosis, who for the first time were able to afford health insurance under the ACA and now face uncertainty about whether they will have coverage or be able to continue to afford the cost of coverage.

Last but not least, I work in a rural community hospital whose doors are always open and that will treat patients whether or not they have insurance coverage.  I need to advocate for my hospital so that we can keep our doors open.

Capitol Hill Day, March 29, will bring together ACCC members representing cancer programs from across the country.  Together we will be standing up for our patients, for access to quality care close to home, and for our cancer programs.


Virginia Vaitones, MSW, OSW-C, is oncology social worker at Pen Bay Medical Center in Rockport, Maine, and a past president of the Association of Community Cancer Centers (ACCC). 

Speak Up Now!

by Leah Ralph, Director of Health Policy, ACCC

U.S. CapitolFor this year’s ACCC Capitol Hill Day, Wednesday, March 29, ACCC advocates will descend on Washington, D.C., with newfound motivation. As Congress grapples with the future of the Affordable Care Act (ACA) and debates the merits of protecting patients with pre-existing conditions vs. high-risk pools, refundable tax credits vs. subsidies, requirements for essential health benefits vs. more flexibility in benefit standards, oncology care providers see insurance coverage—and their patients’ access to cancer care—at stake.

Yes, It’s Complicated
The political messaging—not to mention policy minutiae—is difficult to sort through, even for the wonkiest of policy wonks in Washington. The ACA has been plagued with insurer drop outs and significant premium increases for the unsubsidized individual market, but the law has also provided critical patient protections, put an end to discriminatory practices by insurers, and covered 20 million new lives through Medicaid expansion and the health insurance exchanges. Having made ACA repeal their rallying cry for years, Republicans are now trying to find a path forward to make changes to the law. But maintaining those critical (and politically popular) patient protections, preserving essential benefits, and covering more people while also reducing costs for both the system and the patients is far from an easy task.

Preserve Patient Protections
More than ever before, this year on Capitol Hill Day, ACCC members have a critical story to tell about the unique needs of cancer patients and the costs of their treatment. Cancer, in many ways, demonstrates the precise need—and role—for insurance. Cancer diagnoses are inherently unpredictable. Cancer patients can’t plan when they are going to be sick or what kind of insurance they will need to cover their costs. In addition to the personal, emotional, and physical toll a cancer diagnosis takes on individuals and their families, cancer patients need good insurance to protect against the risk of catastrophic treatment costs.

The ACA created critical protections for consumers, including eliminating the ability of insurance companies to discriminate based on a pre-existing condition, like cancer, or to impose lifetime or annual dollar limits on policies. And by providing subsidies to those up to 400 percent of the federal poverty level to purchase insurance, the ACA made progress in closing the disparities gap in accessing cancer care.

Protect Patient Access to Care
In record numbers, ACCC members will set out on March 29 to educate Congress on what proposed changes to the ACA would mean for cancer patients and survivors and their ability to access high quality cancer care in the communities where they live and work. In the context of any ACA repeal and/or replace plan, ACCC members will ask legislators to:

  • Protect access to comprehensive, affordable insurance coverage. This is particularly critical for cancer patients facing high-cost treatments that often turn into chronic, long-term conditions.
  • Preserve critical patient protections, such as the ban on discriminating based on pre-existing conditions, no annual or lifetime limits, guaranteed issue, and allowing dependents to remain on their parents’ plan until age 26.
  • Preserve essential health benefits that require insurers to cover preventive services, like cancer screenings, at minimal or no cost-sharing.
  • Maintain meaningful access to clinical trials.
  • Strengthen patient access to adequate provider networks that include cancer specialists and the full range of services required to provide quality cancer care.
  • Meaningfully engage cancer patient and provider groups in any real effort to repeal and/or replace the ACA.

Beyond coverage and access, ACCC members will also reiterate their commitment to value-based care and any efforts to improve quality, affordability, and access in cancer care. ACCC has long been committed to working with the Centers for Medicare & Medicaid Services (CMS) to achieve true high-value, cost-effective cancer care. ACCC members support the mission and goals of the ACA-created Center for Medicare and Medicaid Innovation (CMMI), which has been the subject of recent scrutiny. More than half of the CMMI Oncology Care Model (OCM) participating practices are ACCC members. These forward-thinking practices are dedicating significant time and resources to making this pilot program work.

However, in the wake of last year’s CMMI ill-conceived proposed Part B Drug Payment Model, ACCC members will also strongly encourage Congress to place additional guardrails on CMMI’s authority, including limiting its scope to targeted, voluntary (rather than mandatory) demonstration programs.

ACCC members have a lot to communicate to busy Congressional representatives and staffers this year. But the stories we will share, from the communities in which ACCC members are working on the frontlines of cancer care, will bring home the impact of policy decisions in the clearest, most powerful terms. Now is a critical time to speak up and be heard—for our patients today and those who will become our patients tomorrow. Join us for ACCC Capitol Hill Day. Your story can make a difference.


The ACCC 43rd Annual Meeting, CANCERSCAPE, March 29-31, will provide a 360-degree look at the healthcare landscape from the Democrat and Republican perspectives with insights on what to expect for reimbursement, alternative payment models, drug pricing, quality reporting, and more. Learn more.

World Cancer Day 2017—Bringing the Message Home

by ACCC Communications

WCD_LOGO_4C“We can. I can.” This is the campaign slogan of World Cancer Day, an international campaign focused on increasing cancer awareness on the national, organizational, and individual level.

This February 4, 2017, the Association of Community Cancer Centers (ACCC) stands shoulder to shoulder with cancer care providers, patients, and families across the globe in recognition of World Cancer Day. Despite advances in diagnosis and treatment, each year more than 8 million people die of cancer worldwide. By the year 2025, this number is projected to increase to more than 11 million.

With the approach of World Cancer Day, ACCC salutes its members in cancer programs and practices across the country who are embodying the “We can. I can.” call to action every day, not only in caring for patients with cancer, but engaging their communities through outreach, education, and screening events throughout the whole year. Here are just a few recent examples of ACCC member initiatives:

ACCC acknowledges all of its members for their “we can” spirit that connects cancer programs and practices across the country in peer-to-peer learning—sharing knowledge, experiences, and solutions—to the benefit of the patients and the communities they serve.

ACCC Goes to Washington

By Leah Ralph, ACCC Director of Health Policy

With the transition to a new administration just days away, the Association of Community Cancer Centers (ACCC) this week joined with other leading cancer organizations to speak out for community cancer care providers and the patients they serve. On January 11, the Obama White House, in conjunction with Vice President Biden’s Cancer Moonshot initiative, hosted a morning-long event Making Health Care Better – Community Oncology.

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ACCC delegation at the White House

ACCC leadership—representing community providers from practices and cancer programs across the country—contributed to the conversation during moderated panel discussions, and provided real-world community perspectives on addressing disparities in access to prevention, diagnosis, and treatment; advancing clinical trials, new technologies, and innovative models of care; and providing support and survivorship services to patients with cancer. The event capped off a year’s worth of work between the Vice President’s office and oncology stakeholders across the country, including multiple meetings with ACCC members, to advance the priorities of Vice President Biden’s Cancer Moonshot Initiative and a commitment to achieving a decade’s worth of progress in cancer research in five years.  Don Graves, Counselor to the Vice President, thanked the cancer patients and providers in the room for their work to advance the goals of the Cancer Moonshot and, addressing the uncertainty around the future of the Vice President’s initiative, told the audience “the Cancer Moonshot will continue through you.” The Vice President recently announced he would start a nonprofit organization to continue to address the broad – and complex – issues around cancer research and funding. And late last year, Congress passed the 21st Century Cures Act, which provides $1.8 billion for Cancer Moonshot efforts at NIH.

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ACCC Advocates Heading to Capitol Hill

In the afternoon, ACCC co-sponsored a Capitol Hill briefing on Innovation and Access in Quality Cancer Care. Addressing the uncertain political environment, Senator Jon Tester (D-MT) highlighted some of the achievements realized by the Affordable Care Act (ACA), while Representative Fred Upton (R-MI) and Representative Diana DeGette (D-CO) described the bipartisan effort behind passage of the 21st Century Cures Act. Advocates were assured that funding provided under the Cures Act will be secure, regardless of the fate of the ACA. Co-sponsoring the briefing along with ACCC were the Cancer Support Community, the American Cancer Society Cancer Action Network, the Community Oncology Alliance, McKesson Specialty Health, Sarah Cannon, and The US Oncology Network.

As the U.S. healthcare system continues to grapple with transformative change, sharing the story of cancer care delivery in communities where patients live, work, and vote is critical to helping policymakers and legislators understand the impact of policies, regulations, and legislation. Join ACCC for Capitol Hill Day on March 29, in Washington, D.C., and share your story.  Learn more here.

Fasten Your Seat Belts. . .

By Leah Ralph, Director of Health Policy, ACCC

Overlapping roadways As we head into the New Year, 2016 is rapidly receding in the rear view mirror. Still, it was quite a year. We saw the Obama Administration finalize regulations for sweeping physician payment reform in Medicare, oncology practices nationwide navigate the first year of the Oncology Care Model (OCM), policymakers try – and fail – to push through drug pricing reform with a national mandatory demonstration program, the 21st Century Cures Act signed into law, and the drug pricing debate hit a fever pitch, fueled by public scrutiny of recent spikes in drug spending and prompting a range of policy proposals to reduce spending on pharmaceuticals, raising bigger questions about how to define value in cancer care.

And after nearly eight years of a healthcare system shifting to achieve the aims – and requirements – of President Obama’s signature health reform law, the surprise election of Donald Trump and transition to a Republican administration and Congress who have prioritized repealing the Affordable Care Act (ACA) in early 2017 – combined with unprecedentedly thin policy prescriptions on the campaign trail – mark the beginning of an uncertain, tumultuous, perhaps even bumpy period for health policy. And fasten your seat belts because it may happen fast: the first 18 months of a new presidency and congress is the most active period of policymaking in the U.S.

ACA’s Uncertain Future

With respect to the ACA, while the health reform law encompasses far more than the insurance exchanges, the public debate to date has been focused on the coverage mandate and subsidies in the individual marketplace. It’s important to note that regardless of the election results, the health insurance exchanges are doing worse than expected. The exchange markets are facing sicker-than-expected risk pools and lower enrollment, causing high premium increases and insurer withdrawals. To survive, the exchanges would have needed stabilization under any administration – meaning a Trump Administration could simply leave the exchanges untouched and effectively allow them to wither on the vine, leaving 20 million uninsured.

But President-Elect Trump has signaled that he favors politically popular consumer protections in the ACA, such as banning insurers from discriminating against people with pre-existing conditions and allowing children to remain on their parents’ health plan until age 26. However the path to achieve this without a requirement that individuals either obtain coverage or pay a penalty remains unclear. And while there’s no agreed-upon replacement plan, Congressional Republicans have also supported allowing the sale of health insurance across state lines, expanding the use of health savings accounts (HSAs), replacing the ACA’s health insurance subsidies with tax credits, and establishing high-risk pools. But none of these proposals would meaningfully restore access to insurance coverage for the more than 20 million people who have gained coverage under the ACA, creating a long road ahead to find ways to cover this newly expanded population in any replacement plan.

What will these changes mean for cancer patients and providers? While the scope and details remain unclear, generally, under the proposals put forward to date, cancer providers may see an increased number of patients who are under- or uninsured, and higher uncompensated care costs. For the exchange population, benefits and cost-sharing assistance will likely be less generous, which could pose significant access barriers to quality cancer care.  At the same time it’s important to note that the ACA overpromised and underperformed – while patients without access to subsidies are seeing out-of-pocket costs spike, concurrently providers’ expectations of gaining fully insured patients under the ACA have not necessarily been realized. Patients with exchange coverage have generally been sicker and more expensive to treat and, on top of that, some providers are starting to see their Disproportionate Share Hospital (DSH) payments evaporate, as agreed to under the law. Fixes to the ACA – beyond what Republicans are proposing – are needed to shore up the long-term viability of our healthcare system for both patients and providers.

The Path Ahead

As the New Year rings in the changes in Washington, D.C., there will undoubtedly be significant impact on the direction of federal policy with respect to access and coverage in 2017. Still, we expect that key market trends such as value-based purchasing will continue. While the fate of the Center for Medicare and Medicaid Innovation (CMMI), which was created by the ACA, remains uncertain, we suspect that Medicare’s push towards value-based payment is inherently non-partisan and the movement to test different ways to pay providers based on cost and quality is here to stay. In fact, many experts predict that 2017 will be the year value-based purchasing moves from concept to reality. CMMI has implemented more than 50 demonstration programs. Some of these are becoming mandatory, including bundled payments for cardiac care and joint replacement.  (At the same time, the Republican-controlled Congress may create some guardrails for CMMI, including limiting its ability to implement mandatory demonstrations.)  Just around the corner, Medicare physician payment is shifting from fee-for-service (FFS) to value-based purchasing as required under MACRA . Reporting on MACRA measures begins in 2017 and will determine provider Medicare reimbursement in 2019. And the pharmaceutical industry is also engaged in value-based purchasing, increasingly pursuing outcomes-based contracts with private plans.

Where the Rubber Meets the Road

In 2017, ACCC members will need to consider how value-based payments will increasingly shift responsibility for managing cost and quality to providers, and how your cancer program is positioned to engage in a risk-based reimbursement structure. Providers should also prepare for a shift in coverage for patients, and anticipate how to respond to changes in access to care.

Now more than ever is the time for oncology care providers’ voices to be heard – join us in Washington, D.C., March 29-31 for ACCC’s annual policy meeting, Cancerscape, to understand how policy changes will impact your program and patients, engage in policy discussions with your colleagues, and help shape the future of healthcare policy in 2017 and beyond.  So buckle up, check out the Cancerscape agenda, and register today.

CMS Part B Drug Demo Unlikely to Move Ahead

By Leah Ralph, Director of Health Policy, ACCC

Centers_for_Medicare_and_Medicaid_Services_logoJust before Thanksgiving, top Senate Democrats asked the White House not to issue a final rule on the Center for Medicare and Medicaid Innovation (CMMI) proposed Part B Drug Payment Model – a national program that would significantly reduce reimbursement for Part B drugs. This was  a good sign for our efforts against the proposal, and on November 21, we passed an important deadline for CMMI to release a final rule. We are now within a 60-day window of the new Administration taking office, which, if a final rule were to be released, due to a series of administrative rules in Congress, makes it much easier for the new Administration to simply pull back the rule rather than having to do it legislatively.

Simply put: we passed a critical deadline, and we’re very optimistic that we will not see a final rule on the Medicare Part B Drug demonstration for the remainder of the current Administration. ACCC spoke out strongly against this ill-conceived proposal. Hundreds of ACCC members weighed in with their members of Congress, and ACCC produced financial analysis that we shared with the committees of jurisdiction in both the Senate and House of Representatives that showed precisely how devastating cuts to Part B drug reimbursement under this proposed model would be on both practices and hospitals. ACCC thanks you for your efforts to block this poorly-conceived experiment. This is a victory for cancer patients and providers across the country who can now continue to provide high-quality cancer care close to home.

With a new year and a new Administration upon us, we will continue to face both opportunities and challenges in the oncology policy landscape. ACCC is committed to preserving the cancer delivery infrastructure, and we will continue to work with policymakers to develop thoughtful policies around value-based care and an appropriate, sustainable reimbursement system for all settings of care.

Why It’s Important to Carefully Examine Your Practice’s 2015 PQRS and QRUR Reports

by Brittney Fairman, Policy Analyst, ACCC

Centers_for_Medicare_and_Medicaid_Services_logoOn September 26, 2016, the Centers for Medicare and Medicaid Services (CMS) made available the 2015 Physician Quality Reporting System (PQRS) Feedback Reports and the 2015 Annual Quality and Resource Use Reports (QRURs) for every group practice and solo practitioner nationwide. The reports identify providers by their Medicare-enrolled Taxpayer Identification Number (TIN), and reflect who satisfactorily reported data on quality measures under PQRS and, in the QRURs, how physicians performed in 2015 on the quality and cost measures used to calculate the 2017 Value Modifier. Importantly, these reports will determine whether a practice or solo practitioner will receive a bonus or negative payment adjustment in 2017.

In 2017, those who fail to meet the 2015 PQRS reporting requirements may be subject to a penalty of up to two percent, and practices may face a Value Modifier penalty of up to four percent when performance is compared to national quality and cost performance.

ACCC  encourages members to carefully examine these reports, particularly for inaccuracies, and contact CMS with any questions or concerns about perceived discrepancies. The window to request an informal review is September 26 – November 30, 2016. These reports are not automatically distributed, but must be accessed by authorized representatives from the CMS Enterprise Portal using an Enterprise Identity Data Management (EIDM) account established with CMS.

Reviewing these reports is particularly important in the context of new requirements under the Quality Payment Program (QPP) which will determine reimbursement based on similar measures starting in 2019.

If you are having trouble getting an adequate response from CMS after having contacted them about inadequacies in your PQRS or QRUR Report, please contact  Brittney Fairman at bfairman@accc-cancer.org.


For questions about the 2015 Annual QRUR, 2017 Value Modifier or how to request an Informal Review, contact the Physician Value Help Desk: Monday – Friday, 8:00 AM – 8:00 PM EST             Phone: 1-888-734-6433 (option 3);  Email: pyhelpdesk@cms.hhs.gov

For PQRS and EIDM questions, contact the QualityNet Help Desk:                                       Monday – Friday, 8:00 AM – 8:00 PM EST;  Phone: 1-866-288-8912 (TTY 1-877-715-6222);           Email: qnetsupport@hcqis.org

 

CMS 2017 OPPS & MPFS Final Rules: Top-Level Takeaways

By Leah Ralph, Director of Health Policy, ACCC

Centers_for_Medicare_and_Medicaid_Services_logoThis week the Centers for Medicare & Medicaid Services (CMS) released the final CY 2017 Hospital Outpatient Prospective Payment System (OPPS) and Medicare Physician Fee Schedule (MPFS) rules. ACCC is currently analyzing the rules and will hold a webinar for members with more in-depth information in the coming weeks. Below are some key highlights.

Outpatient Prospective Payment Systems CY 2017 Final Rule

CMS estimates that the policies in the final rule will increase OPPS payments by 1.7% in 2017. The big news: in the final rule, the agency goes forward with the site-neutral payment provision for new off-campus provider based departments (PBDs):

  • Newly built or acquired off-campus PBDs: CMS finalized its proposal to no longer allow new off-campus PBDs (that were not billing under OPPS as of November 2, 2015) to bill under OPPS beginning January 1, 2017. CMS is finalizing the Medicare Physician Fee Schedule (MPFS) as the applicable payment system, but is also establishing new MPFS rates specifically so that hospitals can be paid directly for these new (what CMS is calling “non-excepted”) items and services. Hospitals will be paid under the MPFS at these new rates, which will be billed on the institutional claim and must be billed with a new claim line modifier “PN” to indicate that an item or service is non-excepted. For 2017, the payment rate for these new services will generally be 50% of the OPPS rate (with some exceptions, including payment for separately payable drugs, which will not be reduced). Packaging and certain other OPPS policies will continue to apply. Important: CMS specifically notes that items and services provided at new off-campus PBDs will continue to be reported on the hospital cost report and therefore eligible for 340B drug discounts if the parent hospital is a 340B eligible hospital. Find discussion of the impact of this policy on 340B discounts on pages 648-649 of the final rule.
  • Existing off-campus PBDs: CMS largely backed off its proposal to limit the expansion of outpatient items and services that can be billed under OPPS for existing off-campus provider-based facilities. PBDs that were billing under OPPS prior to November 2, 2015, can continue to bill for those services under OPPS—and expand those services beyond the 19 clinical families CMS had originally defined in the proposed rule. However, CMS has said that these facilities must remain at the same physical address to continue to bill under OPPS unless it is an extraordinary circumstance, such as a natural disaster. This may be short lived though as CMS also indicated it will continue to look at this and that the agency is “interested in what data…could be collected that would allow us to implement a limitation on service expansion” for these exempted facilities.
  • Packaging Policies:
    • CMS is finalizing its proposal to create 25 additional C-APCs, which are primarily major surgery APCs within the various existing C-APC clinical families.
    • The agency is finalizing its proposal to base packaging on a claim, rather than on date of service, so that services that are provided during a hospital stay that spans more than one day are packaged.
    • CMS finalized the expansion of a policy that excludes molecular pathology tests from CMS’ laboratory packaging policy to other Advanced Diagnostic Laboratory Tests (ADLTs).

Physician Fee Schedule CY 2017 Final Rule

The CY 2017 Medicare Physician Fee Schedule final rule focuses on policies aimed at improving pay for primary care, chronic care management, mental health care, and diabetes prevention. The rule’s provisions are expected to have a neutral impact on hematology/oncology, radiation oncology, and radiation therapy centers, and a -1% impact on radiology. Select cancer-related provisions include:

  • Payment for Mammography Services: CMS finalized a new coding framework based on new CPT coding for mammography services. The coding revision reflects use of current technology used in furnishing these services, including a transition from film to digital imaging equipment and elimination of separate coding for computer-aided detection services. CMS is maintaining current valuation for the technical component of mammography services in order to implement coding and payment changes over several years.
  • Medicare Telehealth Services: CMS finalized the addition of several codes to the list of services eligible to be furnished via telehealth, including: advance care planning services, end-stage renal disease related services for dialysis, and critical care consultations furnished via telehealth using new Medicare G-codes. CMS is also finalizing payment policies related to the use of a new place of service code specifically designed to report services furnished via telehealth.
  • Appropriate Use Criteria for Advanced Imaging Services: The Protecting Access to Medicare Act (PAMA) of 2014 established a new program to promote the use of appropriate use criteria (AUC) for advanced diagnostic imaging services under fee-for-service Medicare. As a component of the Medicare AUC program, CMS finalized the first eight priority clinical areas, which include cancer of the lung (primary or metastatic, suspected or diagnosed). CMS also finalized the clinical decision support mechanism (CDSM) application to allow for preliminary or full qualification; the deadline for the first round of applications is March 1, 2017.

View fact sheets for both rules here: OPPS and PFS.

 

Life, Interrupted: One AYA Patient’s Cancer Journey

From the recent ACCC 33rd National Oncology Conference, this is the second in a two-part blog series highlighting featured speaker sessions focused on adolescent and young adult (AYA) cancer patients.

NOC 2016 Crowd

On Friday morning, October 21, conference attendees heard the AYA patient voice loud and clear in a riveting presentation by Suleika Jaouad, author of the award-winning New York Times column, “Life, Interrupted.”

“My name is Suleika Jaouad, and I am a cancer survivor.” With that Jaouad began the story of her experiences as a young adult with cancer.

“Looking back, the symptoms had been there for awhile,” she said. But getting to a diagnosis turned out to be a lengthy, arduous, and scary process.  Originally told she had “burnout syndrome,” it took months to eventually learn that she had an aggressive form of leukemia. At 22 years of age, Jaouad had no family history of cancer, she always ate organic, and was a straight A student. Lesson learned: “Cancer doesn’t care what your GPA is or how good a person you may be, because cancer doesn’t discriminate.”

Life interrupted is what cancer feels like, Jaouad said. Overnight she lost everything she had worked for as a young adult, having to move back home into her childhood bedroom. “I lost my job, my apartment, and maybe worst of all, I lost my independence.”

Knowledge is Power, But. . .

Where and how to find the “knowledge” about your cancer and treatment “was a bigger challenge than I expected,” she said. With providers, she often felt “lost” in the conversation. “I wanted to understand what lay ahead, but often felt too overwhelmed, intimidated, and sometimes embarrassed to ask them to explain and re-explain.”

While searching the Internet, she came across a list of side effects and “one word stuck out to me—infertility.” No one on her medical team had mentioned this side effect to her. “Lack of information on that felt like a breach of trust early on in my treatment. . . . I wanted to make this decision with my medical team,” she said, not have it be a decision that was made for her. “Preserving my ability to be a mother one day felt like a very important lifeline to a very uncertain future.”

Once she brought the topic up with her team, she was provided with resources. But lesson learned: Clear, open communication between herself and her medical team was not always a given. She would have to take an active role in her treatment.

Echoing Thursday morning’s Helping AYAs Be Loud! session’s call to action, Jaouad emphasized that AYAs face unique medical, professional, and psychological challenges. It’s almost as if AYAs are oncology’s tweens, she said, too old for pediatrics but too young for the adult oncology unit. Young adults are a misunderstood and overlooked part of the cancer patient population.

I Wanted a Cure, Not a Trial

In 2011, at the end of the first round of treatment a biopsy showed that standard treatment hadn’t worked and she was going into bone marrow failure. Because a bone marrow transplant was becoming less likely, Jaouad said, she had to face the possibility that she might not be cured. It was then that she learned about clinical trials. Ultimately, she enrolled in a trial and after 8 months was in enough remission for a bone marrow transplant.

Survivorship: Unknown Terrain

Although she received excellent care, Jaouad did not learn about her cancer program’s survivorship care clinic until after she wrote a column focused on how, as a cancer survivor, she lacked any kind of roadmap for the way ahead. She was then connected to the cancer center’s survivorship program, which provides resources to help patients stay healthy in the long-term both physically and psychologically.

Lesson learned for providers: Make sure patients are connected to the resources that are already in place. After all, “what’s the point of going through all these treatments if it’s not to live a good life and a healthy and meaningful life?”


Stay tuned for more from the ACCC 33rd National Oncology Conference. Read about an innovative program for AYAs at Seattle Children’s Hospital’s Building Hope (Oncology Issues Nov/Dec 2013).

 

 

 

 

 

 

Helping AYA Patients to Be Loud

By Amanda Patton, ACCC Communications

What does it mean to “be loud”? Sometimes it means just being heard.

Lauren Lux speaks at the ACCC 33rd National Oncology Conference.

Lauren Lux speaks at the ACCC 33rd National Oncology Conference.

For adolescent and young adult (AYAs) cancer patients, that can be a challenge. Two powerful sessions at last week’s ACCC 33rd National Oncology Conference focused on how to “hear” the voice of AYAs and understand what patient-centered care looks like to this under-served patient population. This two-part blog series recaps key session takeaways.

In the opening session of the conference, Lauren Lux, LCSW, UNC Lineberger Comprehensive Cancer Center, along with Niklaus and Lucy Steiner, co-founders of the Be Loud! Sophie Foundation, reminded the hundreds of conference attendees just how important it is to raise the volume about the unique and unmet needs of AYA cancer patients. In establishing the Be Loud! Sophie Foundation, the Steiners are honoring the vision of their daughter, Sophie Steiner, who passed away in 2013. The foundation’s name comes from lines of a poem Sophie wrote:

The Steiners speak at the ACCC 33rd National Oncology Conference.

The Steiners speak at the ACCC 33rd National Oncology Conference.

. . . Be loud

And move with grace

Explode with light

Have no fear…

Sophie’s vision was to help young cancer patients stay true to themselves in the face of overwhelming illness. The foundation has helped create the Adolescent and Young Adult Program at UNC Lineberger Comprehensive Cancer Center.

Why Be Loud?

Each year nearly 70,000 AYAs (roughly between the ages of 15 and 38) are diagnosed with cancer, Lux said. This group is:

  • Severely under-represented in clinical trials
  • Less likely to access “adult” oncology support services
  • More likely to experience financial toxicity as a side effect of cancer
  • Seeing only a modest increase in cure rates over recent decades.

The bottom line: AYAs have unique and unmet needs, Lux said.

How can cancer care providers better “hear” AYAs—and help these patients’ needs be addressed? The first step is establishing effective communication. Lux, who is director of the Adolescent and Young Adult Program at the UNC Lineberger Comprehensive Cancer Center, shared practical communication tips for connecting with and empowering AYAs. “You don’t have to be cool,” she reassured attendees. What you do have to be is:

  • authentic
  • flexible
  • compassionate
  • honest
  • willing to get to know the PERSON not just the PATIENT

A second step is to recognize how important having some control over their lives is to AYAs. “I consider myself an ‘opt in’ activity for people,” said Lux. Rather than scheduled appointments, she will drop by patients’ rooms and ask if the timing is good for them. She also encourages lots of visits from friends. The Steiners, too, stressed how important it is for AYAs to have connection with the non-medical, outside world.

Have the Sex Talk

Conversations about fertility preservation and sexual activity are not one-time events for AYAs, Lux said. Fertility preservation is a huge issue for this patient population. It is expensive and is usually not covered by insurance. AYAs need information about sex before, during, and after treatment, and these conversations should also involve their partners, she emphasized. For cancer programs, it is essential to decide who on the care team “owns” having this conversation with patients and their significant others, she said. “When no one owns it, it doesn’t happen.”

With the AYA population, the caregiver role is complex and nuanced. Helping ensure that adolescent and young adult patients are empowered to voice their choices is important, Lux said, and it’s important to empower them in their conversations with their providers.

Take Action

Lux offered some no-cost steps that cancer programs can take today to improve care for their AYA patients:

  • Schedule AYA clinic days—arrange for adolescent and young adult patients to come to clinic on the same day
  • Create an AYA Advisory Council
  • Explore social media options, for example, blogs
  • Provide information on local and national AYA organizations
  • Check out online resources, such as Stupid Cancer and Stupid Cancer meet ups.

The session’s number one takeaway: Ask your AYA patients what’s important to them.


Learn more in part two: “Life, Interrupted, One AYA Patient’s Cancer Journey.”