BY JAMES ROMANO

When we were young, we all developed strategies on how to convince our parents to turn “No” to “Yes” for something we dearly wanted: a later curfew, going to a party, or something we could not live without. As time goes on, the desire to go from “No” to “Yes” does not change, however our needs become larger. The situation becomes more serious especially for those living with a rare or chronic disease. Denial of treatments or services from health insurance providers is a frequent practice in the rare and chronic disease community. The key is to determine what motivation the decisionmaker needs to progress from “No” to “Yes.” When dealing with an insurance company or a pharmacy benefit manager (PBM), we need to advocate for our own best interest. However, the insurance company is counting on you and patients like you to take “No” for an answer.

This article will provide a number of recommendations to pursue to get to “Yes.” Those recommendations include: 

• Document all conversations you have with an Insurance Provider of PBM.

• Document all coverage and access issues with your patient advocacy organization.

• Go through the Health Insurance Appeals Process.

• Appeal to the monetary self-interest of the insurance provider. 

• Contact patient assistance organizations.

• Contact your elected representatives.

The first recommendation is to document all conversations you have with the health insurance provider or PBM. The patient or caregiver needs to document names, dates, and phone numbers. The patient should obtain the name of the person they are dealing with and note if they are with the insurance company or PBM. If the staff person does not provide a last name, please ask for an identification number. Plenty of times I have spoken with patients who tell me what they said to the company and relay the conversation. However, if you cannot provide details about who you spoke with, then it is as if the call never happened- it becomes a situation of he said/she said. Many insurance providers record the calls for quality assurance reasons and if you can share details, the company will go back and listen to the recording. 

The second recommendation is to discuss the situation with your patient advocacy community. If you are denied a treatment or a procedure, the patient should immediately contact the patient advocacy organizations in their disease state to document the problem. If you are a member of the bleeding disorders community, you should contact The Coalition for Hemophilia B, the National Bleeding Disorders Foundation (NBDF), or the Hemophilia Federation of America (HFA). These organizations work closely together on coverage and treatment access issues, and will want to work with you to document your situation to see if it fits with other trends the organizations are following. 

The third recommendation is following through with the appeal. An appeal is applying to a higher level at the insurance provider for a reversal of the denial. Every insurance company has an appeals process. The Affordable Care Act (Public Law 111-148) guarantees an insurance appeals process. As indicated before, health insurance providers are counting on individuals not requesting nor filing an appeal. According to multiple sources, between 49% to 53% of health insurance denials are overturned on appeal. This is a process, and individuals need to work with your physician, treatment center staff, and patient advocacy group to accurately provide the information included on the appeals form. 

The fourth recommendation to get to “Yes” is to appeal to their self-interest. Patients should appeal to the self-interest of the health insurance provider. Health insurance providers are for-profit companies, the number one goal of these companies is to maximize profits while reducing claims. However, if by denying your claim or denying your treatment or procedure in the short term, the insurance provider is increasing costs in the long term- that is a persuasive argument to get to “Yes.” The patient must provide the data to prove that hypothesis with information from the physician or the treatment centers. Data collection is very important to proving your claim. 

To influence insurance providers in your state, influence the insurance regulators, such as the Insurance Commissioner. In certain states, insurance commissioners are appointed by the governor, in other states they are elected. Contacting your patient advocacy organization can assist with this process in reporting an issue you are having with your health insurance provider. Recently, the Coalition for Hemophilia B assisted a broader effort launched by a state chapter where an insurance company cut off negotiations with the provider network with the result that the hemophilia treatment center was no longer consider in-network. CHB signed a letter of support for patients being sent to the Department of Insurance discussing how patients were not receiving the care that they need.  Patients can file complaints with the Department of Insurance in their state, however accurate information is essential.  

The fifth recommendation is contacting patient assistance organizations or other health care attorneys. Patients can contact different patient assistance organizations in the bleeding disorders space or health care legal team. The Advocating for Chronic Conditions, Entitlements and Social Services (ACCESS) Program at Accessia Health could be an avenue for patients to receive advice regarding next steps to health insurance denials. The program also assists bleeding disorder patients in obtaining free disability legal aid program.  Legal Assistance | Accessia Health. 

The final recommendation is contacting your elected representative, if these other avenues are closed to you, I recommend meeting with your congressional office. Each representative has a local office with caseworkers to help constituents with issues they are facing. Individuals can make an appointment with a caseworker and meet with them to discuss the denial or the problem they are facing. A letter from a congressional office can be of great assistance in these matters. They can also provide advice for the next steps. I know a patient who worked on the personal staff of a Governor of a large state. The insurance provider would not cover his treatment for his disorder. The Governor sent a letter, and the insurance company reversed their position. A letter of concern from a policymaker can make all the difference. 

In conclusion, document all dealings with your insurance provider or PBM. Contact your patient advocacy organizations to explain the situation and obtain their advice on moving forward. Work to file an appeal with the help of your physician or treatment center staff. The Coalition for Hemophilia B stands ready to work with you to become the best advocate for you and your family.