Appeal for CHOP



August 12, 2012

To the Medical Management Team of Geisinger Health Plan (GHP), 

My name is Jennifer Stringham and I am writing to you on behalf of my husband and myself regarding your decision to deny a second opinion appointment at Children’s Hospital of Philadelphia (CHOP) for our son Jackson Stringham. Jackson sees a Nephrologist (Dr. Muchant) and a Urologist (Dr. Sumfest) at Geisinger Medical Center (GMC) for his urological issues - Chronic Kidney Disease Stage 2, Salt-Wasting Nephropathy, Nephrogenic Diabetes Insipidus, frequent Urinary Tract Infections (UTIs), Bilateral Hydronephrosis with Megaureters, Thick-Wall Bladder, Post Urethral Valves, recurrent Urethral strictures, a reconstructed urethra, a repaired Hypospadia with Chordee, and a reversed Vesicostomy. These Drs. have chosen a “sit and wait” approach to Jackson’s care that my husband and I are not comfortable taking in regard to our son’s health and future. Jackson has had 14 UTIs in his 17 months of life, and each infection has the potential to further injure his already fragile kidneys - a fact that we have been repeatedly reminded of over the past year. Our Pediatrician (Dr.Cook) has encouraged us to seek another opinion at CHOP while Jackson’s kidneys are still functioning in an effort to avoid a costly and life changing transplant in the future. When Dr. Cook’s office requested the CHOP approval last week, we were at a family reunion in Seattle, unaware of your 2-day rule. We missed 2 calls from a GHP nurse (Lisa) requesting our rationale as to why we feel that CHOP will best serve our son. I left a message for Dr. Cook to contact your team directly regarding the denial, but she is unfortunately on vacation. I spoke with a GHP representative (Rhonda) who took my verbal request for an appeal, but she called later in the week informing me that I had to write the appeal personally and mail it. I hope this appeal touches upon your concerns and fully demonstrates why it is medically necessary for Jackson to be seen at CHOP.         

                 Last December we requested a second opinion, as we lacked faith in the decisions made for Jackson's care at GMC. We were denied the opportunity to go to CHOP, a leading pediatric medical center in our home state, but were granted a second opinion with a participating provider, Dr. Gearhart at Johns Hopkins Hospital in Baltimore, MD. It was a nonproductive nightmare of an experience and we never actually received the second opinion we were seeking. Jackson’s records were received by Dr. Gearhart’s staff prior to our appointment, but when we arrived Dr. Gearhart insisted that he was unaware that our records had been sent ahead of time. He demanded that he would need to review the records before he could formulate a plan of care - despite the fact that as a registered nurse, I was able to give him a detailed verbal medical history. After listening to just part of Jackson's story, he told me that Jackson was “much more complicated than a simple hypospadia” and once again insisted he must look at Jackson’s records. Dr. Gearhart further berated me because a VCUG was never ordered for Jackson. He said that he would order a VCUG to be done and would call me within a week to give me his medical opinion. I never heard from him again. I left two unreturned messages with his personal secretary. His department's scheduler had trouble ordering the VCUG for insurance reasons. She called the next day to say she was still working on it and would call again with a date and time. I never heard from her again either. Needless to say, I am not remotely satisfied with the care my son received at the Johns Hopkins Urology Department, as they have fully demonstrated through their lack of preparation for our appointment, curt bedside manner, and inability to follow through with their own recommendations, that the health and medical well-being of my son is not their priority.

                   At the time of our Johns Hopkins visit, Jackson had been stable for a number of weeks - infection free and appropriately growing. However in February, he began acquiring UTIs every 20 days. He stopped growing, lost interest in table foods, and was eventually diagnosed with Failure to Thrive. As a result, his treatment team consists of a Gastroenterologist, a Nutritionist, and an Occupational Therapist. He survives on 3 cans of Pediasure per day. His Urologist was finally able to get him back to the OR in July to resect another Post Urethral Valve and scar tissue. Jackson's creatinine is now up to 0.5 and his last BUN was 26. These higher levels show that with these infections, more damage is being done to his kidneys. Last year Dr. Muchant at Geisinger told us that a transplant may not be in his future; however in June, this same doctor told us that a transplant is inevitable without a full explanation as to why this view has changed.

We have been to CHOP previously for in-utero testing, and had a positive experience. Our Pediatrician personally recommends the Nephrologists and Urologists at CHOP. Initially, we were pursuing a nephrology second opinion only; however when the Nephrologist at CHOP (Dr. Meyers) reviewed Jackson’s records, his office called and informed us that he would like to see Jackson as soon as possible and would also strongly encourage him to have an appointment with urology. It already seems that Dr.  Meyers is more concerned for Jackson's health than the doctors at both Geisinger Medical Center and Johns Hopkins Hospital! Though Jackson’s current doctors are accessible via email, they are quite difficult to converse with and often dismiss our concerns without providing answers to our questions. We also had a harrowing experience with his Urologist at Geisinger, Dr. Sumfest, in March of 2011. We took Jackson to see him for multiple complaints: white discharge from his vesicostomy, mottling, and decreased eating. After only meeting with us for five minutes, Dr. Sumfest dismissed our concerns as being over-reactive parents. Four days later Jackson was in an intensive care unit fighting for his life from a UTI and sepsis. Furthermore, we have been given contradicting information and prognoses on Jackson’s health and need for further procedures from his team at Geisinger. It is a very difficult task to raise and support a child with many health problems, and it has become even more difficult when we, as Jackson’s parents, have to doubt the recommendations of the very doctors who hold his life in their hands as a result of their own conflicting actions and words. 

Given the above information, I implore you to reconsider Jackson’s need to visit CHOP, where doctors have already shown concern for his situation. As a parent, I am bound by the love for my son to pursue any avenue that may improve his quality of life, prevent readmission to inpatient hospitalization and save his kidney and urologic function. With a thorough medical evaluation and second opinion, my husband and I will feel more confident in moving forward with Jackson's treatment. If the doctors at CHOP provide a novel plan of care, new options may be available for his future, as we fight to keep Jackson’s kidneys working for as long as possible and attempt to avoid a transplant.

My husband and I thank you for taking the time to read this and for your consideration in allowing Jackson a chance to visit CHOP for the second opinion that he deserves. We have tentative appointments scheduled for September 5, 2012. Without this visit, each new UTI is a chance for his kidneys to incur more damage and potentially brings him closer to daily medications, blood pressure issues, dialysis or a transplant and a life of immunosuppressive drug therapies. These interventions are costly and life changing. If there is any chance to avoid this future for our son, we must explore it now before it is too late. 

Please do not hesitate to contact me if I can provide you with further information that will aid in your decision.  

Sincerely,

  

                                                                                                717-615-5100

                                                                                                jennstringham@msn.com

                                                                                                322 W Woods Dr. Lititz, PA 17543

***I wish I had looked on GHPs website before mailing this, I would've mentioned the $63,297.17 Sepsis bill from March of 2011!!***