CF Roundtable invites you to write for the upcoming issue!

CF Roundtable invites adults with CF to write for our Spring 2018 issue. All submissions are due on March 15th.

The Focus Topic is “Maintaining Mental Health With CF”. Some questions to ponder as you write are:  Does your CF affect your mental state? What do you do to deal with it? Do you have any information to share with our readers on how to deal with depression or other mental conditions that are caused by having CF? Continue reading CF Roundtable invites you to write for the upcoming issue!

List of CF Patient Assistance Programs

Patient Assistance Programs

AbbVie 
CREON® CFCareForward Patient Support Program offers nutritional services to eligible patients, as well as financial and educational support for patients and families.
http://www.creon.com/CFCareForward
1-855-227-3493

Chiesi USA 
Chiesi USA offers prescription access support, financial assitance, and product counseling for patients taking BETHKIS® (Tobramycin Inhalation Solution) and PERTZYE® (pancrelipase) 
ttp://bethkis.com/support-services/
http://www.pertzyecf.com/patient/free-support-and-savings/r
1-888-865-1222

Genentech, Inc.
Genentech Access Solutions 
http://www.genentechaccesssolutions.com/portal/site/AS/
1-866-4-ACCESS
Pulmozyme® Access Solutions Co-Pay Card Program 
https://www.activatethecard.com/pulmozyme/welcome.html
1-877-794-8723

Gilead
Cayston® Access Program
http://www.gilead.com/responsibility/us-patient-access/cayston%20access%20program
1-877-722-9786

Novartis Pharmaceuticals
Patient Assistance Now (Spanish Speaking Services) 
http://www.pharma.us.novartis.com/info/patient-assistance/patient-assistance.jsp?usertrack.filter_applied=true&NovaId=2935377019348182802
1-800-245-5356

Vertex Pharmaceuticals
Vertex GPS: Guidance & Patient Support (Kalydeco® or ORKAMBI™)
http://www.vertexgps.com/
1-877-752-5933

RespirTech
Customer financial assistance program for patients using inCourage® airway clearance therapy.
http://www.respirtech.com/reimbursement-incourage-airway-clearance-therapy/patient-financial-resources
1-800-793-1261

Live 2 Thrive 
Live 2 Thrive Offers copay assistance, free vitamins and supplements, and nutritional information for eligible patients. 
https://www.live2thrive.org/
1-888-936-7371

OTHER RESOURCES

Foundation Care 
List of company assistance programs 
http://www.foundcare.com/fc-patients/reimbursement-help/

Cystic Fibrosis Patient Assistance Foundation
Assistance for affording medications and devices for managing CF
https://www.pparx.org/prescription_assistance_programs/cystic_fibrosis_patient_assistance_foundation

Cystic Fibrosis Services
Additional patient assistance programs for those without insurance coverage 
http://www.walgreens.com/topic/pharmacy/cystic-fibrosis-services.jsp

Boomer Esiason Foundation
Links to assistance programs for Tobradex, Creon, Aceon, Estratest HS, Prometrium, EstroGel, Pulmozyme, Advair, and Cipro
http://www.esiason.org/what-is-cf/resources/patient-assitance

HospitalBillHelp.org 
Guidance for Californians facing hefty hospital bills 
http://www.hospitalbillhelp.org

NeedyMeds.org 
Additional Patient Assistance Programs
http://www.needymeds.org

Partnership for Prescription Assistance
Database of Patient Assistance Programs
(Search by drug, company or program name) 

http://www.pparx.org/prescription_assistance_programs/list_of_participating_programs

Patient Advocate Foundation
Mediation and arbitration services for patients with debilitating and life-threatening illnesses.
http://www.patientadvocate.org/

Introducing Jerry Unplugged!

We are thrilled to announce that Jerry Cahill has launched, Jerry Unplugged, a new blog segment on his site.  Jerry is a Delta F508 and R117H #CF patient who is post double-lung transplant by 6 years this April! Not only is Jerry an advocate for #CFAwareness, but he is a coach, athlete, and friend! Join him on his journey as he shares his insights, experiences, and explains why he cannot fail❗
Stay tuned for much more of #JerryUnplugged!

Read the first blog here: http://www.jerrycahill.com/who-am-i/

Continue reading Introducing Jerry Unplugged!

CF and Menopause—I have questions…

By Georgia Brown

As a woman with Cystic Fibrosis, at 47, I am considered old—but it is a title I relish.  It means I have weathered the CF storm and I look at each birthday as an accomplishment.  But as I enter the next phase of my life, I find I have more questions than answers.

While I don’t fear menopause necessarily, I do fear embarking on this life changing phase without understanding how CF puts its unique twist on it.  And that is why I am glad that I have found the Cystic Fibrosis Reproductive and Sexual Health Collaborative (CFReSHC).  Each month the group meets to discuss issues specific to women with CF.  Then CFReSHC uses the feedback from meeting participants to help shape future CF research.  This is one way, we, as patients, pave the way for improved sexual and reproductive healthcare.  

The next virtual meeting “Hormones Across the Lifespan” will be Thursday, February 22, 2018 from 11 am to 1:00 pm EST.  Dr. Raksha Jain of the University of Texas Southwestern will discuss how hormones affect women with CF from puberty to menopause.  Then, the CF women in attendance, will break into smaller groups to discuss personal stories and identify the top three hormone-related topics that need further research.  The meeting is open to all women with CF in the United States.  For more information on CFReSHC and for login information from your laptop, or mobile device, email CFReSHC at cfreprohealth@gmail.com. Women who attend receive a $25 gift card from Amazon.  

Introducing ‘This Lung Life,’ a Column by Ella Balasa

Below is the first post of an original column that will be published once monthly. Enjoy!

Fulfillment to me means achieving a dream, pursuing a passion, striving to be happy every day, and finding joy in what I do. To say I did my best and made every moment count. I believe having those dreams and feelings of fulfillment comes from motivation. Motivation to do and be better in whatever parameters I set for myself. My motivation for life comes in the most innate form — the will to live. To live the fullest life I can, in the time I am given to live it.

Having cystic fibrosis has shaped me to want to live in this way. My motivation to Introducing ‘This Lung Life,’ a Column by Ella Balasahave this attitude has grown with each passing year, though it’s taken time to gain the maturity, experiences, and confidence to find my identity and purpose.
Continue reading Introducing ‘This Lung Life,’ a Column by Ella Balasa

How to be a Hermit in Flu Season – Top 10 Things to do to Avoid Winter Bugs

By: Beth Sufian

In the past month, many newspapers have reported that large numbers of people in the United States have fallen ill from widespread flu in every state except Hawaii.  People with CF are especially vulnerable to flu and other viruses that pop up in winter.  People spend more time indoors so it is easier for flu and viruses to spread.  I remember one of the first articles I read in CF Roundtable was by Joe Kowalski one of the founders of CF Roundtable.  He wrote about being a hermit during winter and how it reduced his incidence of getting sick.  I thought it was an interesting idea and after 18 years of doing a similar thing in winter, I thought I would share my strategies.

Here is a list of the top 10 things I do to try and reduce the likelihood of getting sick in winter. I know some people are already anxious about getting sick and this blog post is not meant to increase anxiety.  My hope is that one or more of these strategies may help some of you stay healthy during the winter.

Please share any effective strategies you use in the comments section below

1.Take Your Own Pen                                                                                                              On your next trip to the store watch as people take the pen at the checkout and sneeze or cough right on the pen. When you go to the store, doctor’s office or any other public place where you may need to sign something bring your own pen. It is easy to find pens with a stylus cap to use in stores that use a screen for signatures.

2. Take a Small Bottle of Hand Gel and a N-95 Mask                                                    If you find you have touched a surface that has been used by many like a door handle then make sure you have a bottle of hand sanitizer so that you can clean your hands.  In addition, keep a N-95 mask in your purse or backpack.  If you find yourself in a space with a person or many people who are coughing or sneezing you can quickly put on the mask.  If you feel self-conscious about wearing a mask just remember the last time you were sick and that should put those thoughts to the back of your mind.

3. Wear Gloves                                                                                                                        Wearing gloves can help you avoid germs when out in public.  While it is advised you should not shake hands with people this is a hard habit to break.  Wearing gloves allows you to shake hands and lower the risk of passing germs to yourself.  However, you need to make sure you wash the gloves frequently.

4. Step up your Treatments                                                                                               It is hard to avoid sick people if you work in an office or in a job that exposes you to the public so it is important to make sure you are doing your daily CF treatments.  In a perfect world, everyone with CF would do all the breathing treatments prescribed each day without missing any doses.  In reality, things get in the way.  Most people with CF tell me they normally skip a lot of treatments each week.  During winter it is important to reduce the number of missed treatments.  Medicine cannot work if it stays in the bottle.   People with CF often say “I do not have time to do my treatments”.  I think the opposite, I do not have time to get sick so I must make time to do my treatments.  If you are working in an office or going to school it is hard to avoid people who are sick but taking good care of yourself can reduce the chance of catching a winter bug.  Also, make sure you go for quarterly CF Care Center visits so that your CF Care team can monitor your health.

To make treatment time more enjoyable find something you really like to do and do it during treatment time.  If possible make that the main time you do the activity.  For example, if you like watching movies or playing video games make treatment time the time you watch movies or play games.  It takes discipline but can really help decrease missed treatments. Listening to music while doing treatments also helps to reduce the noise of the machines and can make treatment time relaxing.  Some people meditate while doing treatments and report it has a calming effect.

5. Avoid Crowds/ Avoid Sick Visitors                                                                             In the late 1990’s I was on and off IV’s many times due to illness.  I realized that often I finished a round of IV’s and would then go to a party or a big meeting and would be sick within 3 days.  When I started restricting my contact with sick people during winter and beyond my own incidence of illness decreased.  My close friends know they should cancel a lunch date with me if they think they may be sick or someone in their house is sick.  I still go out to lunch with friends but in winter I avoid big gatherings. For example, if my daughter’s school is having a meeting of parents I make sure I sit toward the front or back (depending on the room) on the side and not in the middle of the group.  But if I know the meeting will be in a small room with the potential of having a lot of people in attendance I send my husband to the meeting and stay home.

6. Exercise at Home                                                                                                           For me, going to a public gym or exercise class during winter makes me nervous.  I used to attend a yoga class that I enjoyed.  During the winter months half the class was sneezing and coughing and I decided that was not a good place for me to be exercising.  The same thing happened at a local gym.  Now I use yoga videos and step up the number of times I walk my dog.  I know in some places it is too cold to walk outside.  If you have to go to an indoor gym try to go at an off time.

7. Shop at Off Times                                                                                                      Once winter starts I become very disciplined about when I shop.  I love a certain grocery store in Houston that has beautiful food but it can be mobbed on the weekend and at lunchtime.  The other day I drove to the grocery store at 11 am but saw the parking lot was full.  I was tempted to just “run in” because I had driven there and needed a few things.  But I turned the car around and headed home.  I find that when the store first opens at 8 am there are very few shoppers so that is the best time for me to go.  If you work or go to school and this is not possible see if someone else can get things for you.   Some stores now have a way for you to order things online and then pick up the bagged items at the store. This fairly new service can be very helpful to people with CF.

8. No Airplane Travel                                                                                                         In the late 1990’s I was still traveling in winter. I would finish a course of IV’s and feel good and then a week later I would board an airplane and head to a work meeting, wedding or family event.  Within 3 days of returning from the trip, I would be sick and back on IV’s.  After 3 winters of this cycle of IV’s, travel and getting sick again I realized there was a direct correlation between my travel and getting sick.

My solution was to impose winter travel restrictions.  I do not fly on an airplane in January and February unless I need to travel for medical care.  This year I think I will extend my rule to mid- March given the widespread flu activity and what looks like extended cold weather in many places.  I have been restricting airplane travel since 2000 and have seen great results in terms of my health.  Also by having an absolute rule, no one feels slighted if I miss their wedding or event.  I do wear an N-95 mask when I fly on a plane in other months.  However, I found when I traveled in winter when I got to my destination (especially if the place had cold weather) I still got sick because I came into contact with a lot of sick people.

I travel a lot the rest of the year so having 2 months at home is a treat.  I just cleaned out 28 years of boxes that have accumulated in my attic.  February my goal is to clean and organize my closets.  In Houston where so many lost everything in Hurricane Harvey, it feels good to send things I do not use to those who need help.

9. Rest                                                                                                                                         I have come to the conclusion based on conversions with thousands of people with CF that people with CF do not enough sleep.  For those who work or go to school, there is always a shortage of time as a person tries to do breathing treatments in the morning and night and fit in work and school (or the other way around).  Those who are not attending work or school may find they have interrupted sleep due to coughing, low blood sugar or other health issues which results in exhaustion in the morning.  A decline in health also brings with it the need for more sleep. Sleep is extremely important and helps your body fight off viruses, the flu, and other bugs.  While it seems rare for most CF physicians to talk about the need for sleep it is very important and can really improve health and reduce the chance of getting sick.

10. Stay Connected                                                                                                               In Joe Kowalski’s day there was no Internet, Facebook or Twitter.  Talking on the phone was the way he stayed connected to friends and family during winter.  I make plans to speak to friends or to meet them for coffee or lunch when they feel well.  I also like to plan fun things to do in the spring and summer while I am in my winter cocoon.  I may have to pass up going to a party or an event in winter but I have found the reward of not being sick is worth it.  I look forward to reading of the strategies CF Roundtable Readers use to avoid winter bugs.

 

 

 

CYSTIC FIBROSIS WIND SPRINT 68: CIRCUIT TRAINING 3

For people with cystic fibrosis, getting “back” into shape is a common occurrence. Because of the nature of the disease, patients often experience set backs in both their health and fitness routines. But, exercise is an important and essential part of remaining compliant with treatments and medications in order to live a longer, healthier life with CF. Continue reading CYSTIC FIBROSIS WIND SPRINT 68: CIRCUIT TRAINING 3

USACFA History: How a group of adults with CF helped create a community without computers, email, or the internet

Our story begins with Lisa McDonough, a young woman with CF. Lisa wanted to find a way for people with CF to connect with each other and share their thoughts and strategies related to living with CF. In 1989 she singlehandedly produced 4 issues of Roundtable, a newsletter for adults with CF. Lisa knew that she benefited from talking to people with CF on the phone or in CF clinic and she wanted other adults with CF to benefit from connecting and sharing information about living with CF, medications, and staying healthy. Continue reading USACFA History: How a group of adults with CF helped create a community without computers, email, or the internet

Steps in the Journey: CFTR mutation to sweat chloride concentration to survival

Associations between “salty” sweat and early mortality can be found in the scientific literature dating back to the 17th century [1], hundreds of years before a comprehensive medical description of cystic fibrosis (CF) [2]. Insightful observation of excessive dehydration and deaths among children during a 1948 New York City heat wave suggested that salt homeostasis was a fundamental cellular problem in CF [3], with identification of supranormal sweat chloride concentrations remaining fundamental to the diagnosis of CF today. Since identification of the mutated gene associated with CF (the cystic fibrosis transmembrane conductance regulator; CFTR) [4], pieces of the CF puzzle seem to have, for the most part, fallen into place. Continue reading Steps in the Journey: CFTR mutation to sweat chloride concentration to survival

Clinical Trial Opportunity for Phase IV Airway Clearance System

Med Systems is sponsoring a Phase IV clinical study to measure the
effectiveness of the Electro Flo 5000 Airway Clearance System for
people who have been diagnosed with cystic fibrosis. The goal of the
study is to provide health insurers and Medicare with comprehensive
information regarding the system’s performance. The study is designed
to measure the efficacy of the system, which includes the FDA510K
(K031876) device under current indications. The study will last 30 days
and involve using the system for lung clearance and recording the
results in a digital journal. The study should take about 10 minutes per
day to record measured results in the morning after waking. You will
also be asked to use a spirometer and a digital pulse oximeter to
evaluate your lung function after using the Electro Flo 5000 Airway
Clearance System.

Interested participants must be:
 Between the ages of 18-55 years of age
 Diagnosed with cystic fibrosis
 Prescribed chest physical therapy for airway clearance
 Able to perform self-treatment- having manual dexterity
 Residing in the United States

Contact- Dr. Leigh Mack: CFtrial@mackbio.com or Phone 888-935-
8676 ext. 706