The Cactus and the Butterfly: Advocating Best Care for America’s Children.


Sunday December 15, 2013 | Abby White, WE C Hope CEO


In early 2013, treatment was cancelled without warning for several Arizona children receiving care at Children’s Hospital of Los Angeles.  No alternative plans were offered for essential life and sight saving therapy.  The families approached us for help.  Read on to find out how we worked on their behalf to protect the children’s access to high quality on-going care.

People often ask “why did you begin working in the USA?”

Advocating best retinoblastoma care in America

Our non-profit was founded in England and Canada in 2005 to address the needs of children who struggle to access specialist care.  Roots of the first program were established in Kenya in 2006.  As the organization grew, co-founder, Abby White, received a steady stream of requests for help from American families whose path to optimal care was filled with obstacles.

Abby and her co-founder, Prof. Brenda Gallie, were troubled by the number of families turning to an international charity for help, but challenged about how to respond.  The pair felt powerless to help as they watched care for several children unravel due to poor awareness, lack of co-ordination, insurance issues and inadequate family support.

In 2010, one child received three exams under anaesthesia at three different centers in three states, in just five days.  EUA is an essential and routine part of retinoblastoma management, but it is also an invasive procedure, potentially traumatic for the child (and parents), and not without risk to health.  The physical, emotional and financial burdens heaped on the family could have been avoided with collaboration and communication.  Ultimately, the child lost both eyes.  Could more collaborative care have saved some sight for the child, or avoided post-enucleation chemotherapy?  Probably.

The experience of this child and family inspired our team to investigate the possibilities of establishing a US chapter that could help challenge some of the current obstacles to optimal care.  World Eye Cancer Hope USA (formerly Daisy’s Eye Cancer Fund) was founded in 2012 and is currently building up its core team.  Yet even in its fragile infancy, the organization is fighting for effective care, and winning.

In March and April this year, several families receiving care at Children’s Hospital of Los Angeles (CHLA) were informed that their child’s approaching EUA and treatment had been cancelled.  They were told that Arizona Health Care Cost Containment System (AHCCCS) and CHLA had failed to negotiate a fee schedule for the children.  None of the families were given sufficient warning to make alternative arrangements for care, and none was offered an alternative treatment or funding plan.

One of the affected children is the Granddaughter of our USA board secretary, Teri Dornhecker.  On further investigation, she learned that AHCCCS planned to redirect all current and future state funded patients to Tucson for treatment and follow up, to obtain care at a lower cost.

CHLA is the only center of excellence for retinoblastoma in the Western USA.  For many years, the hospital has worked in close collaboration with Phoenix Children’s Hospital (PCH), sharing the care of children with complex eye cancer (young babies, bilateral and extraocular).  The Tucson hospital has no track record in the management of retinoblastoma.  The AHCCCS plan could have significant life and sight threatening implications for children.

Recognizing the severity of this situation, WE C Hope USA convened a small committee at the end of April to launch a response.  The team consisted of Teri, Lori Padilla (representing Retinoblastoma of Arizona – RBAZ), Becky Matthew (WE C Hope Director) and Abby White.  The committee requested an urgent meeting with Dr. Amy Leverant (Rb ophthalmologist, PCH) and Linn Murphree (Rb ophthalmologist, CHLA) to discuss possible solutions.

Our team met by conference call on May 9th.  Both doctors expressed thanks to our team for raising the alarm as neither was aware of the scale of the situation.  They also shared our concern that funding decisions appeared to be made without knowledge of the high level care required, and the proposed new care pathway for state aid patients would be unacceptable.  We agreed a collaborative plan of action and assigned tasks to implement immediately.

Our team networked with hospital billing administrators and key decision makers in the AZ state legislature and AHCCCS.  Governor Brewer connected us with Debbie Reichow, Medical Management Specialist at AHCCCS, and Program Manager with contractual oversight of care delivery to Arizona’s Medicaid population.  From here we made progress in establishing the real obstacles to care.

Butterfly feeding from a cactus flower

Following our intervention, CHLA agreed to reinstate care until September, to allow time for negotiations without disrupting children’s critical treatment.  If a resolution could not be achieved by September 30, CHLA would again be forced to stop treating existing AHCCCS patients and would not accept new patients.  The clock was ticking…

AHCCCS works with several external contractors to deliver its programs.  However, the contractor does not have authority to refuse care recommended by an AZ medical professional, nor do they negotiate a fee schedule for retinoblastoma care.  Internal investigations concluded this situation arose from incorrect coding, leading to miscommunication between the hospital, contractor and AHCCCS, and a reactive move to reroute care in-state.

CHLA reported that while coding issues do take place, this was not the reason for their radical and regrettable decision to halt patient care.  They felt the contractor’s reviewers did not understand the complexity of this rare but most common form of infant eye cancer, and were frustrated by lack of follow up to resolve the matter.  Bills – even undisputed amounts – were going unpaid for up to seven months due to the contractor’s requests for documentation and repetitive case file copies with each individual bill, requests that CHLA felt were unreasonable.  CHLA’s requests for dialogue were unreturned, leading to a deadlock situation that forced them to stop care due to non-payment.

Upon establishing the root cause of the situation, and receiving the doctors’ concerns about the potential impact on children’s life and sight, AHCCCS withdrew plans for Tucson based treatment.  They also identified a dedicated person to work directly with CHLA on Rb care in future,

However, the issue of past-due bills and contract fee schedule remained.  AHCCS is not involved in pricing contracts – this is a task of their approved contractors, and the contractor was reluctant to engage in conversation.

Throughout the summer, we maintained steady pressure on all sides to work together.  A resolution finally came in early August, when the contractor’s parent company became involved.  On August 5th, Teri Dornhecker and Abby White met with CHLA Associate Vice President of Contracting and Payor Relations, Steve Peiser, to discuss the latest situation.  As that meeting took place, the outstanding bills were paid in full, and without condition, enabling full reinstatement of the previous collaborative care pathway between Phoenix Children’s Hospital and Children’s Hospital Los Angeles.

We are thankful this situation has been resolved, and that our involvement was instrumental in dissolving the stalemate, but this was a very frustrating standoff to observe.  There were significant discrepancies in the information reported by the three parties (contractor, AHCCCS and CHLA), and the key link – the contractor – was unwilling to participate in negotiating compromise.

Retinoblastoma requires immediate treatment and close monitoring during and long after treatment.  A delay of two weeks or more before treatment or mid-course can reduce the success potential of a treatment, result in need for more aggressive therapy with more intense side effects, and even lead to loss of an eye that might have been saved.

Hands Around The Children

Knowledge, communication and collaboration are power.  If all sides share and receive one another’s specialized knowledge, and are willing to discuss and listen to concerns, they should be able to have a productive working relationship with one another in the best interests of each child and family.

We are delighted that in this instance collaboration between WE C Hope and RBAZ had immediate impact, protecting access to high quality care.  We are especially thankful to Dr. Murphree, Dr. Leverant, AZ Senator Dr. Kelli Ward, Governor Brewer’s office, Steve Peiser at CHLA and Debbie Reichow at AHCCCS for working with us to preserve best possible care for Arizona’s retinoblastoma affected families.  We will continue to monitor care to ensure the commitments are fulfilled and no family has further delayed care.

This situation has alerted us to potential challenges in maintaining smooth delivery of multi-state care as the Affordable Care Bill is rolled out.  We will monitor progress carefully and are ready to respond if families in Arizona or other states experience challenges in accessing care.

There will always be isolated cases of an individual family’s access to high quality care being hindered.  The situation in Arizona has highlighted the issues our more vulnerable community members may face, and through our experience of working with all sides to resolve it, we have learned how we can help remedy such situations when they arise in the future.

As individuals and as a community, we should be mindful of the potential for insurance and billing processes to become barriers to expert care.  Our success in resolving this situation should boost confidence in our capacity to advocate practical child focused solutions to such challenges.  We hope our experience will empower families to speak up and seek help when these obstacles are encountered, so that no child suffers needlessly.

Due to its rarity and the need for highly specialized care, many families affected by retinoblastoma require out-of-state care.  Even when medical care itself is of very high calibre and delivered by eminently qualified doctors, families receiving care at multiple treatment centers across state lines encounter many challenges. Insurance and billing issues, poor communication between treatment centers and departments, lack of emotional, practical and financial support, all conspire to hinder best care.

We are committed to building a future in which all children in America have stable access to high quality evidence based care that protects the child and promotes quality of life for the whole family.  Though dispersed across the country, we refuse to tolerate the inconvenience of distance as a barrier to achieving effective care – our children deserve the best.

We are still building our dedicated team to pursue our long term mission of delivering quality national awareness, medical care and family support.  If you wish to be part of the growing movement to ensure our children and our children’s children receive the very best life and sight saving care, please contact us to discuss how you can get involved.  Working together, we will overcome retinoblastoma!

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