Advocating for What is Right

As head of patient advocacy for CSI Pharmacy, Michelle Vogel spends much of her time jumping through hoops on behalf of patients to get insurance companies to pay for the essential services they need. She also wasn’t shy about advocating for herself when she was in the hospital last summer with COVID pneumonia.

Recently, however, Michelle got a bill for several thousand dollars from the hospital for services not covered by her health insurance plan during that episode, and it baffled her. She had already met her annual deductible and out-of-pocket maximum, so she expected all further charges to be covered.

When she reviewed the itemized statement, however, she could see that some of the charges for the nurse practitioner who oversaw her care were being denied by her insurance company. What she couldn’t understand was why the plan denied these charges on some days but not on others, even though the codes used to identify those services were identical. It didn’t make sense.

“I do appeals for a living, and I didn’t even know how to go after this one,” Michelle says. “How do you appeal something when you don’t really know why you’re being denied?”

Michelle spent hours on the phone with customer service representatives from both the hospital and the insurance company, trying to unravel these questions and to press her case for what she knew was right. But the insurance company insisted that the hospital had filed the claim with the wrong procedure code, and the hospital insisted that they had not made a mistake.

On top of it all, Michelle is a COVID long-hauler. More than six months later, she still has lingering shortness of breath, daily migraine headaches, severe fatigue, and stomach symptoms. Having to fight with the insurance company over a bill they should have paid to treat this disease was more than she could bear.

At one point, Michelle was ready to give in and just pay the bill. The hospital had reduced some of the charges, but she was still left on the hook for nearly $1,000 dollars that she thought should have been covered by insurance. But it was a lot of money, and she couldn’t just let it go.

“It was irking me to no end,” she says. “And I kept thinking, how many of our patients get bills like this. What do they do?”

What Michelle did was write letters to both the insurance company and the hospital. In these letters, she briefly told her personal story about how her mother unknowingly exposed her to COVID, how her mother died from the disease shortly after, and how Michelle spent nearly a week in the hospital struggling for her life.

She then explained what she understood about the insurance case and asked that her situation be reevaluated and the charges covered or dropped. In making her case, she included details—claim numbers, procedure codes, and charges she was being billed for—along with her understanding of what her insurance plan should have covered.

In the end, she was successful. Recently she received a notice from the insurance company saying the denial was overturned and they would cover the outstanding charges. It was a huge success for this patient advocate as well as a lesson in perseverance. Now, she says, she will write letters for everything.

“I always say appeal, appeal, appeal, and I wasn’t going to do it,” Michelle says. “I had to tell myself, listen to everything that you preach. You have to do this.”

Tips for writing a successful appeal letter:

  • You will find the company’s phone number and mailing address on the back of your insurance card, on the Explanation of Benefits (EOB), or on the denial letter from the company.
  • Include the patient’s name, the policy number, and the policy holder’s name.
  • Be sure to include your own contact information.
  • Write a concise, detailed note about why you think the charges were denied in error. Be sure to cite the terms of your insurance policy that apply to the situation.
  • It helps to tell your own story, but keep it brief.
  • Include a photocopy of any documents that will support your argument, including the EOB with details of the denial. If this is not possible, provide the date on the denial letter or EOB, what charges were denied and the provider who was supposed to be paid, and why (if you know) the charges were denied.
  • Always keep dated notes, receipts, correspondence, and other documentation of your interactions with the insurance company and/or the hospital or provider.
  • For insurance companies, check your EOB to find out the procedure for submitting an appeal, and be sure to follow these guidelines.  
  • Be a pest. Timeframes vary for each plan and provider, but if you haven’t heard back within about two weeks or the time frame specified in the EOB, call to be sure your materials have been received and show in their system.

CSI Pharmacy has patient advocates who can help you navigate this and other health insurance challenges. We offer this service regardless of whether or not you are a CSI Pharmacy patient. Drop us a line at [email protected].

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Be an Advocate

COVID-19 was the last thing on Michelle Vogel’s mind the day she raced to South Florida to care for her elderly mother who had fallen in her home. Her mom hadn’t been feeling well that week. She thought she had a urinary tract infection again. As it turned out, Judy Vogel had COVID pneumonia. She died a week later in ICU.

Michelle is the head of CSI Pharmacy’s Patient Advocacy team. Since the beginning of the pandemic, she has tirelessly insisted that everyone needs to wear a face mask, wash their hands or use hand sanitizer, and maintain social distancing. And she walks the talk. She knows that the lives of the immune compromised patients she cares for depend on this.

It never occurred to her, however, that she would need to protect herself from her own mother. Judy lived alone. She rarely left the house. And she took precautions. No one knows how she might have contracted this highly contagious condition, but she gave it to her daughter.

Five days after learning of her mom’s diagnosis, Michelle herself tested positive for COVID. As someone who lives with several rare, chronic conditions, she knew her chances of developing severe COVID pneumonia were high, and over the next few days she did become very sick.

“I’ve had migraine headaches, but they’re nothing compared to COVID headaches,” Michelle says. “And I’ve never been so tired. I’ve never had so much pain in my legs that they just give out. The coughing is worse than any bronchitis. And then it’s just odd to lose your smell and taste. My stomach, the diarrhea, the chills and fevers…it just hits every part of you. I even have skin lesions.”

With the support of daily telemedicine checks, Michelle battled the disease at home for a week. Her doctors started her on a corticosteroid (prednisone), which has been shown to reduce lung inflammation in COVID patients. They tried azithromycin (Z-Pak), which has antiviral properties, although it has not been reliably tested in COVID patients.

They also ordered cough suppressant medicine and a portable nebulizer that helped her to breathe in a bigger dose of medication to open her lung passages. From an online supplier, she ordered a pulse oximeter (a medical device that fits over your finger) to be sure her blood oxygen levels stayed adequate. Still, she ended up in the hospital with COVID pneumonia.

“There’s a lot doctors can’t see on a telemedicine call,” she says. “They don’t see you when you’re gasping for air. They can’t listen to your lungs to hear how congested you are. And how do you get a chest x-ray or labs drawn when you’re too exhausted to drag yourself out of the house?”

Michelle is the person many rare disease patients turn to for advice on navigating the maze that is our healthcare system, overcoming health insurance obstacles, and accessing the expensive therapies that keep them alive. She is an expert who loves sorting out these challenges.

So during the week she spent in the hospital, Michelle became her own advocate. She knew, for example, that remdesivir (an antiviral medication) and convalescent plasma (blood serum with antibodies from COVID patients who have recovered from the disease) had shown some positive results, so she requested these. She also asked about other treatments and was offered a clinical trial to test a new biological therapy.

While no one expects to come down with COVID—or any other disease, for that matter—Michelle’s experience shows the importance of educating yourself about whatever condition you find yourself burdened with. Know what drugs and therapies are used to treat the disease and ask if they might be right for you (or your loved one). And if you don’t understand what the doctors are saying, ask questions until you do.

“COVID-19 has affected all of us in one way or another,” Michelle says. “I have stayed vigilant in wearing my mask and isolating to stay safe. I never imagined that it would touch my family, take my mother, and leave me battling with COVID pneumonia. Please stay safe so this doesn’t happen to you or someone you love. And if it does, be an advocate for yourself or your loved one.”

Health Information

Concerns about Coronavirus

Those who rely on specialty therapies like IV immune globulin (IVIG) infusions are understandably anxious about the impact of coronavirus containment measures currently being implemented across the country. CSI Pharmacy’s advocacy team have heard from a number of patients, especially those who get their treatments at infusion centers or hospital clinics, who are worried about the possibility of being exposed to the virus in these facilities.

It is extremely important that you get your IVIG treatments, especially during this time when you need your immune system to be as effective as possible. Patients should not postpone or cancel a regularly scheduled infusion.

We urge you to call your infusion site to be sure they are operating as usual. You can also check in with your physician to ask their opinion about coronavirus containment at your facility.

If, however, you can’t or don’t want to leave home or your usual infusion site is closed, home infusion may be an option. CSI patient advocates are available to help you sort out these access options, including continuing at your current site. If you decide you’d like to transfer to home infusion, we can also help you navigate this process with your physician and your insurance plan.

Regardless of where you decide to have your infusions, CSI Pharmacy wants to be sure no one goes without the treatments they need during this public health crisis. Please reach out to our advocates at [email protected] you have questions or need help accessing care.