The 1000 Page Appeal Letter: Covering the Clinical Basis in Experimental/Investigational Appeals

When Attorney Jennifer Jaff appeals denied insurance claims, she uses boxes, not envelopes, for her appeals.

Her average appeal often consumes more than 50 record-gathering, research and development hours. When ready for the box, some appeals can cover more than 1,000 pages.

“If I send in a 1,000 page appeal and I get a denial within ten days, I know they didn’t read it. That can be very frustrating. What you need to do then is file the second level of appeal and then, if you have what’s called an external appeal opportunity, that’s where you’re really going to get your best chance of winning,” Jaff said.

Jaff’s commitment to winning appeals is personal. Jaff’s successful, demanding career as a trial lawyer was interrupted in 2002 by a debilitating episode of Crohn’s disease. Working frequently from a hospital bed, she turned her attention to the plight of chronically-ill patients with the understanding of how much legal finesse is required for successful disease management.

A typical patient she works with has been ill for years, has exhausted traditional treatments and is seeking coverage for the latest medical treatment options. Therefore, Jaff performs numerous experimental/investigation denial appeals wherein the rights to a full and fair review of the appeal is as much a legal question as a clinical one.

She explains that the complexity of her typical appeal usually requires her to develop the appeal in two sections: a literature review and the patient medical history.

The literature review starts at, a free database of abstracts and some full text articles on life sciences and biomedical topics. It is maintained by the United States National Library of Medicine and the National Institutes of Health and is regarded as the most comprehensive clinical research site available to the public. Some articles are free. However, most are only in abstract form and the full text of the article must be obtained at a medical library or a medical organization with online access to the clinical publication. Jaff says the site is easily searchable and her searches are often rewarded with more up-to-date clinical information than what the insurance carriers reference in clinical policy bulletins or guidelines.

Even if the insurance company is using up-to-date clinical information, Jaff said it is important to read the information to determine how applicable the clinical findings are to the exact treatment in question.

“They have a real habit of just quoting language from the abstract and not really reading the article so often they miss a lot of the nuance,” Jaff said.

Once the efficacy of the treatment has been established, the second portion of the appeal is to review the patient’s medical history. While many experimental/investigational appeals may give a brief summary of the patient history or none at all, Jaff submits the entire medical record dating from the diagnosis date to the present. This process may involve gathering records from a number of different treatment providers. However, Jaff said it is important that each symptom, each failed treatment, each side affect, each co-morbidity, be documented.

“We are trying to show that what may be a less commonly used treatment is the only treatment left to this patient,” she said.

Once the appeal letter is composed, the work is just beginning. Jaff acknowledges that such extensive appeal letters do not always garner careful and detailed review. That is where her legal acumen is valuable.

“They certainly do have an obligation to review everything that you send them. Under the federal law known as ERISA which governs employee benefits, an insurance company will lose a case in court if you can show that they haven’t considered all of the patient medical records and whatever else you’ve submitted to them for the appeal. They do have an obligation to review everything,” she said.

Jaff does not hesitate to protest a poor appeal review. Jaff sees a lot of problems with carrier internal review processes, such as lack of attention to detail and lack of appropriately credentialed specialty reviewers. However, she said that her underlying goal is to exhaust internal appeals so that she can submit the information for external review.

“No matter how much I think I’m banging my head against a brick wall when I’m appealing once, twice to the insurance company, I never give up because I know that at the end of that process, I’m going to have the chance at the external appeal and that is going to give me a real chance of success on behalf of the consumer. Persistence definitely pays off,” she said.

The Patient Protection and Affordable Care Act Interim Final Rules for Group Health Plans and Health Insurance Issuers Relating to Internal Claim and Appeals and External Review Processes greatly expanded access to external appeal processes. Like many of the healthcare reforms, the external review requirements are not currently applicable to grandfathered plans and policies. However, state external review process have until July 1 to comply with the reform law’s review standards or policies and plans in that state will be subject to federal external review procedures administered by the Office of Personnel Management.

“Under health reform, appeals are going to be a lot better. I think we are starting to see that. We are starting to see a greater sensitivity. In fact, I just finished with an appeal with an insurance carrier and they called me and asked me if I would be willing to give them some feedback on the process,” Jaff said.

“I do think that there is an effort to improve the process on behalf of some companies and I do think that health reform is going to force people to be better with their appeals process.”

However as improvements are made and more patients and providers avail themselves of external review rights, Jaff anticipates that more appeals will be filed lacking the crucial information necessary to prevail. Once the external review process is exhausted, few options are left.

Therefore, Jaff hopes that the quality of communication and cooperation among all affected parties – patient, providers and carriers – will increase along with better access to appeals. Jaff states that providers undertaking such appeals should do so with a high commitment to quality appeals and a duty to keep patient informed regarding how the process works.

Listen to Appeals Solutions’ Interview with Jennifer Jaff at or visit for information about her patient advocacy efforts.

(Editors Note: Attorney and Patient Advocate Jennifer Jaff died Sept 14, 2012. This article is a reprint of our interview with Jaff in February, 2011, which was previously available only to members. In remembrance of her dedication to patient advocacy, we are making this article available to our entire distribution list. We hope you enjoy this very informative article)

Leave A Response

* Denotes Required Field