By Heather Ferguson
How the New North Carolina Mandate Became Law
In this article, I will share with you how I obtained mandated coverage in the state of North Carolina for lymphedema diagnosis and treatment. It is my hope that readers in many other states will feel confident to embark on the pursuit of similar legislation in their own states. I had no prior experience doing anything of this nature. If I could do this, so can you.
My son Dylan, who turned three in September of 2009, has primary LE in his entire lower body. After months of battling my insurance company and exhausting all of my appeals, they still would not cover Dylan's custom gradient compression garments. Being left with no other alternative, I contacted my district representatives for both the State House of Representatives and State Senate. I had never done so in my life and I had no Idea if they would even respond to me, let alone be willing or able to help. It was my hope that, with their intervention, my insurance company would grant me the external review I had been requesting which they had been refusing. At this point, I had not seriously considered pursuing legislation to mandate coverage; I was just a frustrated mom trying to get coverage for her child's medical needs.
Fortunately, state Representative, Tricia Cotham, was immediately willing to help. She personally contacted the executive offices of my insurance company, and eventually, due to her intervention, they agreed to have their medical director review the case. As a result, they ultimately offered guaranteed coverage of Dylan's treatment (the compression garments) for one year, after which time they would review the matter again and determine whether or not to continue the coverage. I was outraged that they would guarantee only temporary coverage for a disease with no known cure! I also asked if they were going to extend similar coverage to their other policyholders with the same disease, and they would not.
As a result of this experience I resolved to do everything in my power to ensure that my child would never have to deal with what I had to while trying to get coverage for his treatment. My battle with this one insurance company spanned 9 months and resulted in only one year of guaranteed coverage. I shuddered at the thought of all the time, energy and frustration Dylan would spend over a lifetime of fighting for the coverage he needed and deserved. So I made it my motto that although I could not cure him, I could make this disease a whole lot easier for him to live with by guaranteeing treatment coverage for lymphedema.
Early in 2009, Representative Cotham and I began to discuss the content of what would eventually become House Bill 535. Before I reached out to her she had not even heard of lymphedema, but quickly became sufficiently knowledgeable to be the best sponsor of the bill I could have ever hoped for. We decided to go with a bill that would have the best chance of being passed, with provisions that would help the majority of LE sufferers in the way they needed it most The bill explicitly allows treatment by PTs, OTs and licensed nurses, as well as other "other licensed healthcare professional whose treatment of lymphedema is within the professional's scope of practice." This does not rule out massage therapists, osteopaths, chiropractors, etc. who may be properly trained and whose State scope of practice includes lymphedema treatment. Furthermore, the bill covers "equipment, supplies" and "gradient compression garments." Bandages and elastic compression stockings might still be covered as "(disposable) supplies" under the law. These issues will be determined as the implementing procedures are written. This means that we must impose ourselves into the process of developing medical and insurance guidelines which implement the new "mandate". (Click here to read the law in its entirety)
On March, 11, 2009, the Lymphedema Diagnosis and Treatment Bill (HB535) was introduced. In the days just before and after Representative Cotham gathered additional sponsors. HB535 began its journey into law with an impressive four primary sponsors and 27 co-sponsors. Most importantly, both chairs of the House Health Committee signed on as primary sponsors. In a conversation we had during this time Representative Cotham kindly referred to it as "Dylan's Bill" and told me she had put an original copy of the bill in the mail to me; she said it was for Dylan to take to show and tell someday. It meant so much to me that she was optimistic enough about its passage to do such a thing, and it also pleased me to think that if we did succeed Dylan would have terrific story to tell, that would hopefully help ease his possible anxiety about explaining his condition to his classmates.
Collecting additional sponsors for the bill was the first in a series of events I would assist with by contacting Representatives or Senators by email, and trying to get as many other people as possible to do the same. I assembled a contact list of everyone I could think of in North Carolina that I would feel comfortable asking for assistance. I was not shy; my list was long and I think everyone who helped me learned a lot and felt really good about it. My list included friends, neighbors, past and present co-workers, all of Dylan's doctors and therapists, his garment provider, etc. Each time I called on them for help I made it as easy as possible for them to do so. I would send them an email with a brief explanation of what was about to occur, followed by a recipients list, what they should put in the subject line and a pre-written letter they could send as-is or personalize. All they would needed to do was copy and paste everything into a new mail and add their name and address at the bottom (something which is always required when you writing a Senator or Representative). By making it as quick and easy as possible I knew I would have the best chance of getting others to help. I would always include the suggestion that they pass on the email to other North Carolina residents as they saw fit. Additionally, I sought the support of other groups such as North Carolina's Lymphedema Networking Therapists, the prosthetics company who Dylan receives his compression garments through the Susan G. Komen for the Cure, NC Affiliates. I asked each of these groups to ask their members to send emails of support when needed. I went through this process six times: first to collect bill sponsors; when it was to be heard by the House Health Committee; when it was heard by the House Insurance Committee; when it would be voted on by the full House; again for the Senate Health Committee, and then finally for the vote before the full Senate!
The final, and probably most important thing I did, was personally speak before the House and Senate Health Committees. Although I was terribly nervous about it, many Senators and Representatives expressed afterwards how much they appreciated hearing from someone first hand. I am happy to provide you with my Health Committee Address. You are welcome to use it as a template in writing your own someday or use it in its entirety by just replacing my personal information with your own. Note that you will have to get permission in advance to speak. You should ask your bill sponsor who will ask the committee chairperson. Definitely write your statement in advance and practice it. You may be subject to a time limit, so find out and plan accordingly. Although the two times I spoke before the Health Committees were amongst the most nerve-racking moments of my life, they were also the most rewarding. It was incredibly gratifying to see the look of astonishment on their faces and hear them make statements such as, "it's hard to believe how they (the insurance companies) could not already be covering this!"
In fact, to my knowledge, of the five votes the bill faced (House Health Committee, House Insurance Committee, full House, Senate Health Committee and full Senate) the only individuals who ever voted against the bill were a small handful who are staunchly opposed to any sort of government mandates on health care coverage. Had they taken the time to understand that LE coverage is not a mandate of the usual sort (it will not raise insurance companies' overall costs, etc.), perhaps they would have supported it too. But the point is, that while a small minority of lawmakers might still oppose any mandate on principle, the majority just need to be educated about LE and its treatment and then we will have their support.
On that note, I encourage you to educate yourself, if you have not already done so, to the point you feel confident to educate others.
I distinctly remember that early on in this process, I felt wholly unqualified to take on this task, but you will learn as you go just as I did. I still feel much the same way when I think about embarking on my next goal, a federal mandate, and have to remind myself that the hardest part is just getting started. I look forward to this time being able to call on all the wonderful LE advocates around the country for assistance, not just individuals in my own state.
Hopefully a United States Senator or Representative will be found to sponsor a federal bill in the not too distant future. If/when that occurs we must all come together and work for its passage, but in the mean-time we must also continue to work for the passage of as many state mandates as possible. Even though I firmly believe we will someday secure nationwide coverage, it will be a long time in coming. The Women's Health and Cancer Act, for example, took many years from inception to law; my bill in North Carolina, however, took just one year. So our reason to keep
working at the state level is two-fold. One, it will bring coverage to residents of that state in the most timely manner possible; and two, it will bring us closer to the "tipping point".
I urge you to be the impetus for legislation in your state. Bob Weiss, NLN Patient Advocate is always standing by to educate and provide needed information and statistics, as he has done for me, and we are ready and willing to assist and support you in any way we can. I have an outline prepared to help guide you through the process of obtaining a state bill/law which I am happy to provide on request. It is based solely on my own experience of what works and is doable by the average person. It is by no means an authoritative one size fits all approach, but should give you a solid foundation to get started. And Bob has a draft Medicare Lymphedema Diagnosis and Treatment Cost Saving Bill and backup material which has already been seen in dozens of Congress member's offices. You can do this! Please do not hesitate to contact me for any reason, but especially if you are working on legislation in your state, if you'd like to work with me in pursuing a federal bill, or if you, too, have a child with lymphedema.