NTM Northwest Support

A Pacific Northwest support group for sufferers of Nontuberculous Mycobacterial (NTM) Infections and Bronchiectasis

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#1 2017-11-08 20:06:25

Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 177



Comments from July Notes from Dr. Ed Chan,
Lead Researcher for NTM, National Jewish Health-Re: Traveling with Oxygen

Those advices are incredibly helpful…especially the traveling with oxygen…I like the idea of always having a pulse oximeter (they are very small these days and can be gotten for $20-$30 on line, the size of a matchbox, and can be worn around the neck if one so chooses) as cabin pressures in planes are pressurized to ~8,000 feet in elevation - so ~3,000 higher than even Denver. The importance of knowing this is that someone’s oxygen requirement may be significantly more in a plane than in NYC (sea level)…the only way to know is to test one’s oxygen level with a pulse oximeter. For ease of memory and clinical reasons, I always say as long as the oxygen saturation is ~90%, that is OK. Often when walking, the oxygen saturation dips in some people so oxygen may need to be adjusted between walking and sitting still.

Also, keeping the finger/hand as still as possible where the oxygen meter probe goes on can improve the accuracy of the reading…Ed Chan

Member Updates

We were happy to hear the good news that one of our members had come back from NIH with a stable report, with good PFT’s (pulmonary function tests). She had had surgery with Dr. Harris at NYU, husband of Dr. Doreen Addrizzo Harris, and did well. She had been on oral and IV meds for m. abscessus received negative cultures and is considered cured at this point and will continue to be regularly monitored. 

Our “most improved” member, Suzanne continues to do well. She has had surgery and is on inhaled Amikacin. Her last few sputum cultures are normal. The pulmonary wellness center at which she has been treated was recently renovated. The smell of paint and varnish was intolerable to her, and she could not stay for her therapy. It was suggested she call ahead before her next appointment to find out if the odors have dissipated.

Our new member is waiting for her test results to determine whether she is diagnosed with NTM. She has already been diagnosed with bronchiectasis and has already contacted National Jewish to start the process for an appointment.
Another of our members has come a long way in the maintenance of her health. She was on meds for 5 years, and has been off for a while. She is diligent in her care and has modified what she does for work. As a designer, she avoids job sites and fabrics with toxins, but can still provide many of her services to clients.

Cleaning Airway Clearance Devices

One member was concerned about her Acapella She noticed mold inside after prolonged use. Many of us thought she should be using airway devices that can be disassembled for easier cleaning such as the Acapella Choice, or even better, the Aerobika, which has a stronger flutter and is adaptable with a nebulizer.

That led to a discussion of the ways to clean airway clearance devices, which is critical so as not to re-infect our lungs with bacteria.

Daily Options:    Soak parts in hot soapy water.
                Soak in alcohol or vinegar
Weekly Options:    Microwave steam sterilizer bags
                Baby bottle sterilizer   
                Place in boiling water for 10 minutes.

Stem Cell Treatment for COPD Patients-

Someone inquired about stem cell treatment, which is advertised in a few centers across the country. Most of us were unaware of such treatment, and whether it is beneficial to NTM patients. I contacted one of the National Jewish doctors to inquire, and he, in turn, passed the question  to one of his colleagues. Here are their responses.

“I do not know enough to comment but I asked one of the COPD experts here at NJH and he says that these places are NOT to be trusted. He says they are doing questionable things for profit. I think if there is a stem cell study at a medical school, then those are more likely to be trusted.”

“Stem cell therapy is currently a waste of money at best and potentially dangerous.”

Many NTM Cases in the Same Building in NY

It has been observed that some of our members live in the same building, which can lead to the conclusion that there may be something in that building which may promote NTM. Maybe it’s something in the water? The NY health department is becoming stricter in requiring buildings in NY to raise the temperature of their water heaters, which may kill some of the NTM bugs as well as other pathogens.

Topic:  Medical Insurance

***Disclaimer: This is a guide to assist you in making decisions for your healthcare insurance.  The information is only as good as our research. Before making any decisions, be sure to check to be sure you have selected the best plan for you. We do not endorse any specific insurance plans***

Note: A special thanks to Nanette from CT, a health policy coordinator, who was kind enough to fill me in on some of the ins and outs of medical insurance and acted as my second set of eyes in proofing this test. I thank the many others who have provided input on this topic.

Selecting the best medical insurance for you is a complex issue. None of us are experts, but perhaps the following information may be helpful.

The open enrollment period for changing insurance coverage is October 15-December 7 for most health insurance companies. There are certain extenuating circumstances in which changing coverage out of the open enrollment period is permitted . Only a few of us at the meeting have not reached the age for Medicare. The majority of our discussion is focused on Medicare.

If you are not on Medicare:

Contact any providers you think you might wish to use next year to see if they accept your present insurance. Each insurance company is required to list their participating providers in their plan descriptions, so you can check this as well.

Some of our members asked about being worked up at National Jewish Health in Denver. If you opt to do so, here is a link to insurance they accept. This is not an updated list, so it wouldn’t hurt to contact NJH to check if your insurance carrier is not on their list.

https://www.nationaljewish.org/patients … naged-care

Some Things to Know Before Picking An Insurance Plan

If you spend time in two states, or travel around the country, or plan to go to National Jewish, it is preferable to select a plan that will cover you nationally rather than require you to stay  in your state in order to be covered.

https://www.healthcare.gov/choose-a-pla … ing-plans/   

If You Are On Medicare, or Soon to be Eligible

Medicare wasn’t designed to pay all of your medical bills, but will pay a good portion of them. Most people purchase supplemental plans (medigap , which, depending on the plan you choose, cover part or all of the costs Medicare doesn’t cover fully. Be sure to check www.medicare.gov before the end of the year to see whether your basic Medicare or Medigap rates are changing.

Before making any decisions, learn as much as you can about the types of coverage available to you. For information:

Visit the Medicare Plan Finder at www.Medicare.gov/find-a-plan
Get personalized counseling. You can contact your state Health Insurance Assistance Program (SHIP)
Call 1-800-MEDICARE (1-800-633-4227)

Medicare is divided into a number of areas of coverage. Most people have Part A and Part B (called primary Medicare or traditional Medicare). Medigap and prescription plans are optional. If you do not opt for a medigap or drug plan, you will be responsible for paying any costs not covered by Medicare.

Medicare Part A- Hospital Insurance

No premiums for this coverage
    Inpatient care in hospitals (usually for a limited period.)
    Skilled nursing facility care (not custodial or long term care)
Note: Usually the time period of coverage is limited in Part A.
    Medicare Part B

Medicare Part B provides services from doctors and other   health professionals. The rates are set or negotiated by Medicare and are paid by Medicare. Generally Medicare pays 80% of the rate and the patient is required to pay the other 20%, or to buy a medigap policy to cover some or all of the difference. It is important to know the agreement your doctor or hospital has with Medicare. If they have agreed on negotiated rates, the provider CANNOT NOT bill you for fees above the Medicare approved rate. Doctors have the option not to accept Medicare.

Part B coverage includes:
    Outpatient care
    Home health care (limited)
    Durable medical equipment
    Many preventative services

Medicare Part C-Medicare Advantage

Includes all benefits and services covered under part A and B and replaces Part A and Part B if you are covered under Part C. Please note you do not participate or pay premiums for Part A or Part B if you are enrolled in Part C and you may not be enrolled in both.

Usually includes Medicare prescription drug coverage (Part D)

Run by Medicare approved private insurance companies that follow Medicare rules and have premiums set by the individual state. Most Part C plans are state based and out-of-state coverage is generally difficult. Be sure to check this before purchasing a Part C plan.
Plans have a yearly limit on out-of-pocket-cost for medical services
May include extra benefits and services that aren’t covered by original Medicare Part A & B, sometimes for an extra cost.

Plans have a yearly limit on out-of-pocket costs for medical services.

May include extra benefits and services that aren’t covered by original Medicare Part A & Part B, sometimes for an extra cost.

Medigap (supplementary) is regulated by the federal Medicare program, covered within an individual plan category, is consistent from state to state. Premiums, deductibles and co-pays vary from plan to plan and company to company.

In order to participate in Medicare, Part C, and/or Part D, all insurance plans are required to provide reports to you . Reports on the drugs and their cost are reported on a monthly basis. Reports on your medical services are sent once a quarter. At any time, you can go onto the site, www.medicare.gov to log into your account to find such reports.

Medicare Part D-Prescription drug coverage

You are not required to purchase a Part D plan. You should base this decision on the projected cost of your medications, because without a Part D plan, you are responsible for all your own drug costs. In the Part D plans, there is a monthly cost for coverage, as well as co-pays and deductibles. If you are enrolled in Part C that has drug coverage, you cannot buy an additional Part D prescription plan.

In a calendar year, there are four phases in the Part D plan, which will determine how much you must pay out of pocket. The following numbers apply to the 2017 calendar year and are subject to change for 2018.

Phase 1. Yearly Deductible. The amount you have to pay out of pocket before qualifying for initial coverage. Not all plans have a deductible.

Phase 2- Initial Coverage. In this phase, the total cost of the drugs (combination of what insurance pays and your co-pay) totals $3700.

Phase 3- Coverage Gap (aka the Donut Hole). After reaching the total cost of $3700 for your drug costs, you pay a total out of pocket cost of $4900 before reaching phase 4. For example, of the total cost of the previous phase of $3700 and your out of pocket costs were $1000, you would be spending another $3900 out of pocket before reaching the $4900 limit.

Phase 4-Catastrophic Coverage- If you reach this phase, almost every drug is covered until the end of the year.

Member Comments

Original Medicare pays for almost everything, but most often, not in full.

Most in the group have original Medicare (Part A & B, plus a Medigap plan (supplementary insurance).

For medications, many have opted for plans on Medicare, Part D. (On their site, you can plug in the expected medications, and the site will suggest best plans for you.)  www.medicare.gov will do the same for all plans. Medicare is a federal program and therefore is consistent from state-to-state.

The drug formulary (list of drugs covered under your plan, and the associated co-pays for each drug) for Part C is generally released late in the year. They differ for each plan, and change from year to year. While you can use the 2017 formularies as a guide, remember they may change in 2018, so check with www.medicare.gov  or your pharmacy, which is a great source of Part D information. 

    The drug formulary (list of covered drugs) for Medicare Part D was requested. As stated in my copy of 2018 Medicare & You, page 91, “the formularies aren’t covered in the handbook because each plan has its own formulary”. Insurance companies are required by law to provide the formulary of your specific plan. The formularies can change from year to year, so be sure to take a look during the open enrollment period before determining your plan for 2018.

If you plan to sign up for the drug plan, be sure to do so when originally eligible for Medicare. Otherwise, you could incur a penalty if you sign up later. There are penalties for not signing up for Medicare when you are initially eligible.

  From one of our members: “I’ve opted for the highest supplement with United Healthcare for better or for worse. Seems to me most medical offices are happy to hear United Healthcare or Blue Cross Blue Shield for the medigap plan once they know you are on Medicare.” (Note: This may hold true for other supplementary insurances as well.)


Medicare covers infusions administered in an infusion center.

Home infusion (supplies, visiting nurse, etc.) is not covered by Medicare unless it is agreed that one is too disabled to visit an infusion center. (Three years ago, my daily expense for home infusion for the supplies was $50/day. The cost for the visiting nurse was $100/visit. Prices vary from place to place.) The cost of the drug being infused is covered according to your prescription drug plan, whether being infused at home or at a center. A good suggestion was made for home infusion patients. Instead of having a visiting nurse come to the house weekly, you can go to an infusion center or hospital for that service, usually once weekly in which case, Medicare should cover the nurse who will take vitals and flush the line.

More Medicare Information

Medicare Star Ratings- These ratings assess the quality of medical plans. Obviously, it’s best to sign up for a 4 star plan if you are able. The ratings for 2018 have not been awarded as of this date, so here is information as of 2017.

https://www.medicareinteractive.org/get … enrollment

https://www.cms.gov/Newsroom/MediaRelea … 10-12.html

https://www.medicare.gov/sign-up-change … index.html

Medicare Handbook for 2018 is not yet on line. You should be receiving it shortly if you haven’t already. Here is the link for the 2017 Handbook to give you an idea of what to expect and for an explanation of the different benefits.

https://www.medicare.gov/pubs/pdf/10050 … nd-You.pdf

Interesting Reading

https://bronchiectasisnewstoday.com/201 … f-71633649

https://bronchiectasisnewstoday.com/201 … 9-71633649

Debbie Breslawsky, Sept 2017


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