As a parent of children with a chronic illness, every day is a challenge. Our identical twin daughters have had a seizure disorder since birth. It is a challenge to ensure that medications are taken appropriately and timely, and it is an effort to make sure that the supplies of medication are always available. Those are the challenges that are expected. Their doctor, a specialist in pediatric epilepsy, has carefully considered the medications and doses that are needed to control their intractable seizures. I have great respect for their medical team because there are many safety issues to consider when prescribing medications to stop seizures. It is a fine balance between benefit afforded and potential side effects that can occur. What is unexpected and discouraging are the challenges that occur unnecessarily, especially insurance denials.
At the beginning of October, our health insurance plan changed from Blue Shield to Blue Cross as a result of a change in employment. Changes in health insurance coverage happen on a regular basis for consumers. This can happen for a number of reasons. It can be because an employer gets a better contract with a different company, because a consumer shops for a plan that better fits their needs, because of a change in a job, marital status, or other life event. No matter the reason, for individuals who have chronic illnesses the switch in insurance providers can set off a cascade of time intensive efforts and unnerving gaps in care.
When the switch happened for us, we hoped for the smooth transition. After all, both the plans allowed for freedom to choose your doctors. What wasn’t expected was that there wouldn’t be freedom to continue taking the medications that were previously prescribed and had been controlling seizures.
We completed the online forms so that our neurologist’s office could then go through the time intensive process of submitting the current medications to be filled with a mail order pharmacy. When medications are recurrent, there is usually a cost benefit to filling them through a mail order service. You can obtain them in a 90 day supply at a portion of the cost to filling them monthly.
Surprisingly, the process did not go smoothly. One of the medications that was essential for preventing seizures was being denied. For two weeks, the neurologist completed “authorization” paperwork and responded to all the requests of the pharmacy, a time consuming process that takes them away from research and patients. Blue Cross finally explained their denial. The drug in question was a drug that was not on their formulary of drugs approved for use with epilepsy. (Of note, their list had not been updated since 2012). In addition, they cited that the FDA does not approve this particular drug at the dose prescribed. This later explanation is perplexing since the medication had previously been provided through our Blue Shield coverage at this dose for over a year. In fact, it is more likely that Blue Cross did not want to pay the high price for our daughter’s medication and used the FDA approval dosage as an excuse not to cover the cost. It is alarming that one insurance company can cover a medication for years, but another will not cover it at all. When I inquired about this specifically the pharmacist that I spoke with suggested that I ask the doctor for a different medication for my child.
Is Blue Cross suggesting that they are best qualified to determine which drug and dose a child should be prescribed? What kind of system do we have where doctors are limited in their treatment options by an insurance company?
Our daughters are at high risk for having a dangerous seizure that won’t stop if they don’t have the medications to block the pathway of seizure activity. Do we want our most skilled practitioners to be spending their time justifying their choice of medications to an insurance company? Or do we want them to spend their time treating patients and researching new treatment options.
After weeks of speaking with supervisors, explaining my case and emphasizing the dire need, I recognized that I was not going to get anywhere without outside support. The next step was to file a formal complaint with the organization that provides oversight of insurance companies. In California, that is the State Department of Managed Care. They receive all complaints of this nature, just another example of the human capital that is expended on denials like this each year. In addition to filing this complaint, I also contacted a law firm that handles insurance company disputes.
In the end, it was the Department of Managed Care that was able to resolve the dispute and Blue Shield approved the medication for our daughters. It was a waste of resources and time on the part of the physician, pharmacist (who is caught in the middle) and myself.
Our fifteen year old daughters can’t go about their day without anti seizure medications (much the same way that a diabetic needs insulin). Without these medications their lives and our family’s well-being is threatened. We find it ironic that the company that is supposed to be safe-guarding our family’s health has added a degree of complexity and hassle to our already challenging life. Surely, the private health insurance industry can do better than this.
Steps to follow when you get a denial:
- Determine exactly why it is being denied. This should be provided to you in an explanation of benefits or letter directly from the pharmacy.
- Push back. First call the 800 # and ask to speak to the supervisor of the representative who answers. If you are not making progress with the person with whom you are speaking ask for the supervisor’s supervisor. It may take time to work your way up the chain of command. Be prepared to provide a summary of the issue multiple times, because each representative will try to help.
- Communicate with your doctor about what you are being told about the denial. In some cases, your doctor can provide supporting documentation specifying the medical necessity that the insurance company did not have.
- Ask for a list of medications on their drug formulary for the specific class of drugs. Inquire when the insurance company last updated their drug formulary for the interested class of drugs was last updated
- If you have an insurance plan through an employer, notify the human resources department so that they are aware about what their employees are experiencing.
- Contact your state Department of Managed Care to file an official grievance against the insurance company. The onus is on this state agency to investigate the credibility of the denial. https://www.dmhc.ca.gov/
For more information on how to appeal a health insurance denial: http://guides.wsj.com/health/health-costs/how-to-appeal-a-health-insurance-denial/