Hello!
This is Nora writing today about health insurance. There is always something to contest, appeal, argue, etc., with the insurance company, isn’t there? In all fairness, the boys have UCare coverage and the people that I talk to at UCare always seem courteous and competent. But nonetheless, the system is laborious and scary. I just had to file a letter with UCare to get another year of out of state coverage for Ayrie. The likelihood that the best specialist for a rare condition or rare disease is going to live in your state is quite small… so why is it so hard to see someone out of state to treat this rare disease? Why the magical state lines dictating what services are and aren’t an option? It boggles my mind. Really. It’s cheaper to let him go out of state and have better health outcomes, but we have to waste a lot of people’s time and money to make it happen. In case you are interested, I’ve included the letter below.
Cheers,
Nora
UCARE
PO Box 52
500 Stinson Blvd, NE
Minneapolis, MN 55413
ATTN: Complaints, Appeals and Grievances
To whom in may concern,
Thank you for taking the time to review this appeal. As you know, my oldest son Ayrie is four years old and suffers from recurrent respiratory papillomatosis (RRP). Benign tumors (also called papillomas or lesions in the medical literature) develop on Ayrie’s vocal chords and without surgical removal, the tumors are potentially fatal as uncontrolled growths will obstruct the airway. In extremely rare cases, RRP can undergo a malignant transformation and spread to the lungs. He was diagnosed at age one, in January of 2008, and has had twenty-one surgical procedures in the last thirty-one months, all with the goal of maintaining an open airway. Surgery is not a treatment of the root cause, only the symptoms.
In addition to the life threatening aspect of the disease, there are significant quality of life impacts. Ayrie is only able to speak above a whisper for about two-thirds of his life. He struggles to be heard and understood, but is often unintentionally ignored or misunderstood. This impacts his ability to interact normally with his peers in a day care setting, to be heard over daily noises such as a car engine, or to communicate with adults who are not aware of his disease.
Ayrie has a particularly aggressive case of RRP and we have tried the conventional treatment options including excision of the papillomas by carbon dioxide lasers, microdebriders and steel blades. None of these extended the surgical interval and Ayrie has surgery every 4-6 weeks for the first year and a half of this disease. As the disease progressed I became scared for his life and sought alternative treatment. I learned of Dr. Christopher Hartnick in Boston, MA at the Mass Eye and Ear Infirmary, who is selectively using the KTP laser to remove papillomas in children who did not respond to traditional excision measures. Ayrie was the ideal candidate and we he began undergoing surgery with Dr. Hartnick last fall with quite wonderful results.
Before Dr. Hartnick and laryngoscope with the KTP Laser , Ayrie had 21 surgical procedures to remove papillomas in 31 months, or 15 procedures in 19 months, averaging one procedure every 1.25 months, with decreasing intervals between surgical procedures.
After Dr. Hartnick and laryngoscope with the KTP Laser, Ayrie has had 6 procedures in 12 months, averaging one procedure every two months with increasing intervals between surgical procedures.
As we have exhausted other treatment options, and because Dr. Hartnick is the only physician to offer this treatment, we would like to continue this promising new treatment at the Massachusetts Eye and Ear Infirmary. Already we have slowed the growth of the tumors, lengthened the time between surgeries, and improved the quality of Ayrie’s voice. In doing so, we have also reduced the current risk of complications due to anesthesia, and the potential long-term effects on Ayrie’s behavioral and cognitive development.
I have enclosed the only two articles published about the use of the KTP laser with RRP patients.
Thank you in advance. Please do not hesitate to contact me for further information. Thank you for considering my request.
Sincerely,
Nora Murphy
