Missing diagnostic codes contribute to Lyme disease difficulties
Press release from Global Network on Institutional Discrimination:
February 8, 2017
Struck by a duck? Burned because your water skis caught on fire? Have a bizarre personal appearance? Fortunately, the World Health Organization has assigned over 68,000 diagnostic codes to cover these and thousands of other conditions.
When your doctor checks off one of these diagnostic codes, insurance billing goes smoothly, your case is recorded, and data is available to guide medical and public health research and health policy, track mortality, and save health care dollars.
But things can go horribly wrong when accurate diagnostic codes are absent. Many Lyme disease symptoms and complications are not found in the diagnostic codes. For example, Dr. Neil Spector, a top cancer researcher at Duke University School of Medicine, was near death because Lyme disease severely weakened his heart, requiring a life-saving heart transplant 12 years after a tick bite.
Lyme disease isn’t rare. More than 300,000 Lyme disease cases are reported each year by the CDC in the U. S. alone. It is six times more common than HIV/AIDS and twice as common as breast cancer. When appropriate diagnostic codes are missing, care is often denied and unreported, leading to life-threatening and debilitating illnesses. Patients become invisible to the medical system and to those guiding public policy.
Without diagnostic codes, physicians are hamstrung in their ability to properly care for their patients, leaving many cut off from appropriate treatment and insurance coverage. This contributes to great personal hardship, pain, disability and expense.
But this may soon change. The Global Network on Institutional Discrimination recently contacted Dr. Ian Smith of the World Health Organization (WHO) to request a meeting to modernize the Lyme disease diagnostic codes.
Jenna Luche-Thayer, director of the Global Network on Institutional Discrimination, is confident that WHO’s policies and procedures requiring engagement with stakeholders will prevail.
To support WHO’s commitment to equal access to health care, medical and scientific experts around the world have joined Luche-Thayer to develop codes that capture the many serious complications of Lyme disease. Lyme disease patients also inform and support this initiative.
With accurate codes, those “bit by a tick” can soon join those getting “struck by a duck” as having conditions worthy of treatment.
diagnostic codes are essential for billing and insurance but that’s not why we are not getting the care we need in a timely manner .. or even untimely … most insurances will not pay or reimburse a lyme and coinfection patient without with out codes . DrSpector got into the trouble the necessitated a transplant because of willful ignorance practiced by clinicians who would rather see someone dead than than consider a diagnosis of lyme and coinfection.. he needed that transplant because the IDSA and CDC insist on results from a two tier test that is wrong 60-70% of the time .. who does that .. is your cancer test wrong more than half the time .. or your diabetes testing .. but somehow we have become pariahs for mainstream medicine .. Google your ICD-10 codes and take them to your appointments . Check that the numbers are recorded correctly… but your energy.. if you have any.. is better spent working in your communities to raise awareness and doing everything you can to educate the willfully ignorant .
Interesting, I didn’t know that WHO assigned the diagnostic codes or that they were used worldwide. I assumed they were something thought up by U.S. insurance companies and only used here. (I ‘ve never had medical care outside the country)
This will help make the job easier for doctors who are willing to treat Lyme patients. Maybe they’ll be able to see more patients if less time can be spent on paperwork. It might help patients get more of their treatment covered by insurance.
But you are right, the biggest problems are doctors unwilling or unable to treat Lyme and the inaccurate tests used. The CDC does not have to use the criteria they do. They could accept one test, two or a clinical diagnoses by a doctor with tests used only as a guide. (The best way) They could accept any positive band on a Western Blot as a positive test. I would’ve been treated then. Maybe the Global Network on Institutional Discrimination can get the CDC to change their criteria. We can dream, can’t we?
Suzanne so sorry I’m so late to respond to your comment…just found this today…but I LOVE…your comment…wow…said it exactly like I have been for years!
“willful ignorance practiced by clinicians who would rather see someone dead than than consider a diagnosis of lyme and coinfection”
I refer to these awful people in all levels…..as OATHLESS Doctors…or whom ever…just totally OATHLESS torwards humans….I still can’t wrap myself around how many people, gov’t orgs and the such…are like this…..Criminals-killers of mankind…for what? a couple of buck$? Or…convince of not having to do the job they signed up for…a power trip?
Excellent I love to see when progress is made. Now if we can get early detection to the medical profession [doctors, nurses etc] I live in the Poconos of PA a real hot spot for Lyme’s white tail deer all over the place. I was diagnosed wrong twice once be my MD & then by a PA. Friends who have degrees in epidemiology [sp] saw the rash on my chest & said it was Erethema Margins the Lyme rash . The PA had given me Predisone of which I only took 2 pills the blotches got bigger & were spreading. As soon as I started on the Doxycline the rash started to fade.
My problem is that I can’t get anyone to believe that I could have Lyme Disease.
Go see a Natropath! !! I was tested 3 times by a regular doc all negative . Found a Natropath who ran the correct bands…and saw that I do in fact have something attacking my system. . And my reactions to the disease match most of the lyme chart symptoms…My Natropath is sending me to a Lyme specialist. ( Find a good Natropath ! ( they are NOT all alike…so do your research before committing to one.) One who has a Lyme degree.. Drop your doctor’s….please. I was literally dying….my Natropath and a few out of pocket tests have saved my life.
This doesn’t help much if there are not enough drs educated and capable of treating you instead they just look at you and say see you in 3 months . Meanwhile you are struggling to work to pay your bills because you can’t afford the 6 months of job working to apply and most often get denied disability
exactly … coding for dollars is way down my list of issues … I am gratified to see all the effort going into accurate diagnostic testing .. but at the very top of my list is getting well : treatment, insurance participation, living instead of just existing …
Suzanna,
It’s way down on your list because you are wealthy. Most with chronic Lyme and MS are poor. That can’t be argued. An LLMD is necessary. Or an LLND (Lyme-Literate Naturopathic Doctor.)
oh my word … i am not wealthy .. infact I live on my social security widows benefits … yes i am educated and resilient but if you can’t work because you are ill , if every penny went you ever earned went into trying to save your husband’s life,it’s all the same when you weigh the cost of peanut butter or the bread … You might want to think twice before making assumptions about others. Try it .. you will have a better life not being a victim.
and BTW, my lyme clinician is and always has been an ND