Seeking Insurance Authorization for Referral to a Sarcoma Center and /or Second Opinion from a Sarcoma Specialist
Sarcomas are best diagnosed and treated by sarcoma experts in a sarcoma center. The scientific literature reports that diagnoses are more accurate and outcomes are better when sarcoma experts treat sarcoma patients. Getting authorization from your insurance to get a second opinion or further treatment may be an issue. It can be difficult to receive authorization in the same geographic area, outside a network’s panel of providers. It can be even harder if one needs treatment in a different state. It is important to understand your health insurance plan, the process for seeking authorization, and the appeals process, if services are denied. It can be helpful to provide a scientific basis for your request. Principle points to make when requesting a second opinion from a sarcoma specialist or referral to a sarcoma center.
- Be clear that you are asking only for services that are the “standards of care” for sarcoma.
- Be clear that you are asking only for services that are “generally accepted practices in medicine.”
- State that the services you are requesting are consistent with those recommended by national guidelines (see below).
- In general, you should not argue that you need some experimental treatment or want to participate in a clinical trial as this may complicate the issue. Once you seek the second opinion with the sarcoma expert, if he/she recommends a clinical trial, then that is a separate call to the insurance company.
- You may want to state that it is “medically negligent” to withhold these services, which raises serious liability issues.
- Provide references to the scientific literature that support your request.
Below are references to document the need for referral. A very brief summary of the conclusions follows each reference. For the most part, these summaries were extracted from the studies. Guidelines Sarcoma Progress Review Group, National Cancer Institute, January 2004
- See Optimizing Existing Care Introduction, page A19 –
- The standard of care for these tumors varies by histologic type of sarcoma and location. For example, in this small group of tumors, appropriate management varies greatly for gastrointestinal stromal tumors (GIST), pediatric sarcomas, high-grade extremity sarcomas and sarcomas of the retroperitoneum and uterus. Optimal care of these patients requires the multidisciplinary expertise of specialists with experience in the management of their tumors.
- See Priority 1A, page A20 –
- The standard of care for patients with sarcoma should be treated at sarcoma multidisciplinary centers (SMC).
- See Priority 1B, page A20 –
- SMC include a multidisciplinary group of physicians and healthcare workers who have expertise in sarcoma. This group should consist of a surgical oncologist, orthopedic oncologist, medical oncologist, radiologist, pathologist, oncology nurses and rehabilitation specialists. In order to be considered an SMC, at least 50 new cases of sarcoma should be treated at the center yearly. Sarcoma experts should also be members of a sarcoma group such as CTOS, contribute to sarcoma publications and enroll patients n sarcoma clinical trials.See http://planning.cancer.gov/library/2004sarcoma.pdf
Soft Tissue Sarcoma, National Comprehensive Cancer Network; Clinical Practice Guidelines in Oncology, V.1.2008 Note: Guidelines are free but you must create an account to access.
Referral guidelines for suspected cancer in adults and children, National Guideline Clearinghouse; Royal College of General Practitioners, 2005, June
Improving outcomes for people with sarcoma; National Institute for Health and Clinical Excellence, London, UK, March 2006
The following guidelines are available in Annals of Oncology, October 2012
Soft tissue and visceral sarcomas: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up
Bone sarcomas: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up
Gastrointestial stromal tumors: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up
Referral to Sarcoma Center Delay in referral to a specialist soft-tissue sarcoma unit, European Journal of Surgical Oncology, 2005 May;3 (4):443-448, Clark, MA, Thomas, JM
- A fifth of patients with soft-tissue sarcoma encountered important delays in referral to this specialist unit. This duration of delay is likely to have had a detrimental effect on treatment options and outcomes, including survival in some patients.
Soft tissue sarcomas: are current referral guidelines sufficient?; Annals Royal College of Surgery, England; 2005 May:87(3) 171-3; Hussein R, Smith MA
- Although the majority of soft tissue sarcoma in our patients had one or more of the clinical guideline features, there was still an unacceptable delay in referring these patients to a specialist unit. The referral guidelines should be modified with special emphasis on depth, which is the most sensitive, followed by size and the history of rapid growth. This combined with increased awareness of these guidelines and a well-advertised, open-access clinic linked to a specialist unit should allow for a more rapid evaluation of soft tissue tumours.
Importance of specialized centers in diagnosis and treatment of extremity-soft tissue sarcomas: Review of 603 cases; Chirurg 2008, June 5, Lehnhardt M, Daigeler A, et al
- Correct histopathologic diagnosis is essential for adequate treatment of soft tissue sarcomas. Due to the disorder’s rarity, multitude of subgroups, sometimes varying histopathologic appearance, and occasionally inadequate biopsy specimens, diagnosis and grading are challenging. The diagnostic error ratio for nonspecialized pathologists in practice, community hospital pathologists, and academic medical centers was over 60%. For optimal treatment of soft tissue sarcomas, we suggest obtaining expert second opinion to ensure adequate surgical therapy and precise indication for radiation and chemotherapy.
Should soft tissue sarcomas be treated at high volume centers?; An analysis of 4205 patients; Annuals of Surgery; 254(6):952-958, June 2007
- Soft tissue sarcoma patients treated at high volume centers have significantly better survival and functional outcomes. Patients with either large (>10cm), high-grade or truncal/retroperitoneal tumors should be treated exclusively at a high-volume center.
Delays in referral of soft tissue sarcomas; Sarcoma 2008; 2008:378574; Johnson GD, Smith G, Dramis A, Grimer RJ
- Medical professionals rather than patients contribute the greatest source of delay in patients reaching a specialist centre for treatment of soft tissue sarcoma. Adherence to previously published guidelines could decrease this delay for diagnosis of possible sarcoma.
Soft tissue sarcoma – compliance with guidelines; Cancer; 2001 June 1; 91(11):2186-2195; Nijhuis, PH, Schaapveld, M, Otter, R, Hoekstra HJ
- In many aspects of the diagnostic process of soft tissue sarcoma, existing guidelines were not followed, especially in community hospitals. Concentration of patients with STS in a limited number of hospitals and intensified collaboration with specialized centers seem advisable.
Requests for Second Opinion from a Sarcoma Specialist Mandatory second opinion surgical pathology at a large referral hospital; Cancer 1999, December 1; 86(11):2426-2435; Kronz JD, Westra WH, Epstein JI
- Second opinion surgical pathology can result in major therapeutic and prognostic modifications for patients sent to large referral hospitals.
The value of expert second opinion in diagnosis of soft tissue sarcoma; Journal of Surgical Oncology; 2007 October 4; Lehnhardt M, Daigeler A, Hauser J, Puls A, Soimaur C, Kuhnen C, Steinau HU
- For accurate determination of prognosis and to provide optimal therapeutic decision we consider expert second opinion essential for optimal treatment of soft tissue sarcomas.
Consultative (expert) second opinions in soft tissue pathology. Analysis of problem-prone diagnostic situations; Am J Clin Pathol. 2001 Oct;116(4):473-6 http://www.ncbi.nlm.nih.gov/pubmed/22331640
Epidemiological evaluation of concordance between initial diagnosis and central pathology review in a comprehensive and prospective series of sarcoma patients in the Rhone-Alpes region; BMC Cancer. 2010 Apr 19;10:150. http://www.ncbi.nlm.nih.gov/pubmed/20403160
Importance of specialized centers in diagnosis and treatment of extremity-soft tissue sarcomas; Review of 603 cases; Chirurg. 2009 Apr;80(4):341-7. http://www.ncbi.nlm.nih.gov/pubmed/18523742
A European project on incidence, treatment, and outcome of sarcoma; BMC Public Health. 2010 Apr 12;10:188. http://www.ncbi.nlm.nih.gov/pubmed/20384990
Incidence of sarcoma histotypes and molecular subtypes in a prospective epidemiological study with central pathology review and molecular testing; PLoS One. 2011;6(8):e20294. Epub 2011 Aug 3. http://www.ncbi.nlm.nih.gov/pubmed/21826194
Adjuvant and Neoadjuvant Chemotherapy for Soft Tissue Sarcoma; Curr. Med Chem. December 2012 http://www.medfetch.com/r/39993/23278395/ Why you want an experienced surgeon
Local Recurrence of Disease after Unplanned Excisions of High-grade Soft Tissue Sarcomas; Clin Orthop Relat Res. 2008 December; 466(12): 3093–3100. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2628223/
The effect of an unplanned excision of a soft-tissue sarcoma on prognosis; J Bone Joint Surg Br. 2008 Feb;90(2):203-8. http://www.ncbi.nlm.nih.gov/pubmed/18256089 Diagnosis delay (symptom interval) and outcome
The symptom interval in children and adolescents with soft tissue sarcomas. Cancer.2010 Jan 1;116(1):177-83. http://www.ncbi.nlm.nih.gov/pubmed/19862818
The symptom-to-diagnosis delay in soft tissue sarcoma influence the overall survival and the development of distant metastasis. J Surg Oncol. 2011 Dec;104(7):771-5. doi: 10.1002/jso.22006. Epub 2011 Jul 8. http://www.ncbi.nlm.nih.gov/pubmed/21744348
Initial Symptoms and delayed diagnosis of Osteosarcoma Around the Knee Joint; J Orthop Surg (Hong KongO 2010 April;18(1):55-7 http://www.ncbi.nlm.nih.gov/pubmed/20427835
Cost Analysis of the Diagnosis and Treatment of Soft Tissue Sarcoma in Reference Centers, Rev exp Cir Orthp Traumatol; 56 (5) 374-6; Barrientos-Ruiz I, Serrano-Montille J, Ortiz-Cruz EJ
Initial symptoms and clinical features in osteosarcoma and Ewing sarcoma; J Bone Joint Surg Am. 2000 May;82(5):667-74. http://www.ncbi.nlm.nih.gov/pubmed/10819277
Retrospective analysis of the impact of symptom duration on prognosis in soft tissue sarcoma; Int Orthop. 2008 June; 32(3): 381–384 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2323426/?tool=pubmed
Does length of symptoms before diagnosis of sarcoma affect patient survival?; Clin Orthop Relat Res. 2007 Sep;462:181-9. http://www.ncbi.nlm.nih.gov/pubmed/17534186
Delay in the diagnosis and treatment of primary bone sarcoma of the pelvis; J Bone Joint Surg Am. 1999 Mar;81(3):317-25. http://www.ncbi.nlm.nih.gov/pubmed/10199269