Tips | HOPE FOR KATHERINE BELLE

In April 2016, Kentucky became the first state in the country to pass legislation that mandates private insurance cover prescribed vitamins and supplements for mitochondrial disease patients.

Twice a day our five-year-old daughter takes a compounded mixture of vitamins and supplements known as a “Mito cocktail.” Prescribed by her neurologist, this cocktail has shown many positive results, including increased muscle tone, stamina, stability, and a lessened intention tremor.

To date, the Mito Cocktail is the only treatment currently available for mitochondrial diseases.

However, less than 10% of insurance carriers cover this needed medication. Although Kentucky law already mandated coverage, our private insurance carrier continued to deny coverage every month, even going so far as to insinuate that our daughter takes it for “cosmetic purposes and performance enhancement.”

Frustrated and angry over the blatant wrongdoing by insurance companies, we decided it was time to clarify what was already mandated in existing Kentucky law.

Over the past few months, many have asked for advice so they can duplicate our success in other states. Before offering a few general tips to help get you started, I would be remiss not to mention that, combined, my husband and I have a legal and policy background. We have good friends who are Kentucky state legislators and we are familiar with the political players of our state. Further, since 2013, we have become vocal, well-known advocates for our daughter through our various social media accounts, our blog, Hope For Katherine Belle, as a contributing writer for the The Mighty, and by appearing in The New York Times Motherlode Blog. Yes, our careers and platform were instrumental in the speed with which we passed this bill, but don’t be discouraged if you don’t have a similar background.

Finally, I believe timing played an important role in rapid passage. During the same session, Senate Bill 146, known as “Noah’s Law,” called on insurance companies to cover amino acid based formulas, just as we were calling on insurance companies to cover prescribed vitamins and supplements for mitochondrial disease patients. Early passage of Senate Bill 146 and subsequent publicity was fortuitous: Legislators became familiar with the ways insurance companies manipulate language to deny coverage for medically fragile patients. Senate Bill 146 sponsor and physician Senator Ralph Alvardo had another bill filed relating to insurance – Senate Bill 18 – to which the following floor amendment was later added:

HFA2 /HM( R. Smart ) – Amend KRS 304.17A-258 to specify that mitochondrial disease is an inborn error of metabolism or genetics to be treated by products defined as “therapeutic food, formulas, and supplements” and that health benefit plans that provide prescription drug coverage shall include in that coverage therapeutic food, formulas, supplements, and low-protein modified food products for the treatment of mitochondrial disease; specify that this act shall take effect January 1, 2017.

Tips for Successful Legislative Advocacy:

1. The best advocate is an individual personally affected by the proposed legislation. Although a legal and policy background is helpful, it is not required to be an effective advocate for your child or yourself. Advocacy work is not for the faint at heart – it’s a slow, frustrating, deeply personal process, and, arguably, the most crucial part of the legislative process. With hundreds of bills filed per session, legislators depend on advocates to educate them about a subject matter and, as the expert, you are the most qualified person for the job.

2. Request a face-to-face meeting with your representatives or their staff during the slower months between legislative sessions.
They represent your interests and should be willing to listen to your concerns. Tell your representatives your story. You are the expert; teach them everything they need to know. Schedules are packed during session, so it’s best to establish a relationship well before the start of session – this will give you ample time to tell your story and draft any proposed bill language. Likewise, meeting with legislators is an excellent way to learn more about the internal dynamics of your state legislature. Your legislator may not be able to help you directly, but they can help you navigate your way to the person who can be most helpful. And trust me, if you worked around legislators, you would quickly realize there’s no reason to be intimated by them. Yes, they are public figures, but they’re human just like the rest of us.

3. Do your homework and be specific.
While your personal story is the most powerful component, be prepared to share any relevant medical and scientific research as it relates to your cause. Likewise, you have a much better chance of success if you can present legislators with a complete package of drafted legislation, including where it falls in your state’s statutory scheme, as well as any statistical and economic information related the bill.

4. Create a “buzz” for your cause.
Establishing a “presence” through social media is a powerful tool to communicate your cause. Don’t limit your audience to just your own district or legislator – increase your reach across the entire state. For example, create a Facebook page dedicated to your legislative efforts, contact local media, or involve support organizations to broaden your reach. Ultimately, the bigger the “buzz,” the harder you are to ignore. For example, our daughter’s Facebook page and blog has a strong following. When we made the call for action, people listened and acted. Providing simple to follow links with letters to copy and paste and telephone numbers to dial, our grassroots strategy quickly gained momentum across the state. Voters were voicing their support for SB18 and legislators were listening to what their constituents were telling them. Just as you presented a complete package to your legislator, it’s as important to present a complete package to your supporters.

5. Know your audience and be prepared for the unexpected.
Do your research on the political climate and the key players in your state legislature. Even though your cause should be a non-partisan issue, I cannot emphasize enough the role politics play in the legislative process. Although this may not always be the case, brace yourself for the ugliness that is involved in the making of laws. Understand beforehand that it is within the realm of possibility that your cause will be used as a political football. Powerful opponents may come out against you. Establishing a public presence and creating a “buzz” for your legislation is key leverage should you need it. There is only so much a legislator can do from inside the legislature to get a bill passed. Your outside advocacy strategy may play an even more important role.

6. Never give up.
You are unlikely to succeed the first time you try to pass any legislation. Keep trying. Involve more advocates, make more alliances with key legislators, and never stop advocating for your child. Nothing on this planet is more powerful than a parent’s love for their child.

You just experienced the shock of learning your child has a rare disease and now your doctor recommends genetic testing as the next step.

Brace yourself for shock #2: In most cases, genetic testing is not covered by insurance. In other cases, genetic testing is covered under limited circumstances.

Insurance companies are in the business of collecting premiums, not paying claims. The term “healthcare” is a tricky word in this context: Don’t confuse a business that makes a profit from premiums with actual care. The harsh reality is that as a business model, they generally do not care about your child’s health if coverage reduces their profit margin.

Coverage for genetic testing is routinely rejected because companies can do so without fear of backlash. In other words, anything that doesn’t affect the majority of its policyholders is up for grabs. The very name “rare” disease sends a signal to the reviewer that denial of coverage won’t create a big enough stir.

Simply stated, the system is against you.

That said, we have received countless denials from two different insurance companies over the past three years, and have successfully appealed every single one. Here are a few tips for the appeals process:

1. First and foremost, have a current copy of your insurance policy.

If you don’t have one, contact them immediately and request a copy. It is your right as it contains everything covered under your policy. Keep a current copy handy for future use, because, unfortunately, this will not be the last time you’re going to need it.

2. Know your rights.

A) If your claim is denied, you have the right to an internal appeal, meaning you can ask your insurance company for a full and fair review of its decision; B) You often have the right to demand a specialist in the applicable medical field perform the review if denial was based on medical criteria. Request it. These specialists will have more independence and a better understanding of rare disease patients and the value of genetic testing; and C) You have the right to an external review from an independent, third-party – keeping in mind that their “independence” is debatable.

3. Ask your doctor to write a letter.

Most doctors are well versed in this area and will likely mention it when they discuss genetic testing with you. If not, initiate the conversation and coordinate their assistance.

4. Request all documentation related to the claim.You have the right to copies of all documents, letters, and peer-to-peer reviews related to the matter, and all guidelines, protocols or other criteria on which the decision was made for denial.

5. Consider the assistance of an attorney.

There are plenty of attorneys who offer pro-bono (FREE!) assistance. Ask around your community and groups.

Now you are ready to appeal. I like to include a photograph of my child with the appeal letter. Whether a picture is effective or not, I want the reviewer to see the human side of the appeal.

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