ACTION ALERT!

This message comes from OLEY.org – enriching the lives of those living with home intravenous nutrition.


This is an extremely important time to be engaged!

We will be sending alerts periodically, but posting updates to oley.org/Legislation frequently. Stay tuned for updates on this and other important legislative issues.

ACTION ALERT

Ask Senators to vote NO and go back to the drawing board

There have been several developments during the last several days related to the Senate effort to repeal and replace the Affordable Care Act (ACA).

Please contact the offices of your two Senators and urge them to go back to the drawing board!

 

Take Action:

  • Secure the contact information for your Senators by visiting www.Senate.gov and using the “Find Your Senator” query tool in the upper right corner.
  • Call the office and ask for the Health Legislative Assistant. You can either leave a voicemail or request their e-mail address and send them a message using the template below.
  • Politely and occasionally follow up on your request. You should have an expectation that the office will respond to your specific concerns.

[here is a template you could use]

Dear _______,

My name is _________ and I am a constituent from _________. I am also an advocate for (your health condition). I write to urge you to vote NO on the Senate’s healthcare bill and go back to the drawing board.

The Senate healthcare bill would:

  • Jeopardize patient access to quality, affordable & available coverage
  • Cut-off health coverage for millions of Americans
  • Bring back annual and lifetime caps on coverage
  • Price people with pre-existing conditions out of the insurance market

I write to urge you to maintain stability for chronic disease patients as you and your colleagues consider healthcare reform. It is my hope that the Senate will develop a bill that preserves key patient protections and respects the circumstances of those combating chronic and costly illnesses.

Specifically, please ensure any Senate proposal:

  • maintains essential health benefits
  • prohibits pre-existing condition discrimination
  • prohibits lifetime and annual caps on benefits
  • limits out-of-pocket costs for patients in a meaningful way
  • allows young adults to stay on family coverage until they are 26

[Add a paragraph of brief information about your condition. Tell your story.]

Patients need a transparent, bipartisan effort to stabilize the insurance market, bring down premiums, and retain the protections that are so critical to patients, consumers and their families. I urge the Senate to go back to the drawing board, and work together to find ways to protect patients with serious illness.

Thank you for your time and your consideration of this letter. Please tell me how you have responded to my request.

Sincerely,

[Your Name]
[Your Address]


Tomorrow may be too late. Do this today! Silence is no longer an option.

– G-PACT

Repost: from our friends at Mighty Well

Hi all, Jim Sliney Jr, your Newsletter Editor here. What follows is an excerpt from the blog of our friends over at Mighty-Well – sharing their experience at the OLEY Conference, 2017. Enjoy!


At this year’s Oley Conference, the Mighty Well team had the opportunity to connect with potential partners, who share a socially conscious mission to not only improve the patient’s lifestyle, but also to aid caregivers in giving the most supportive care possible– similar to our mission of showing appreciation for caregivers, and “friends in the fight!”

YOU’RE PROBABLY WONDERING, WHAT IS THE OLEY FOUNDATION AND WHY WERE WE THERE?

This year’s Oley Conference was hosted in Greenwich, Connecticut. The foundation was established in 1983 by Lyn Howard, MD, and her patient, Clarence “Oley” Oldenburg. According to the Oley Foundation’s official website, the company is a “national, independent, non-profit organization 501(c)(3) that strives to enrich the lives of patients dependent on home intravenous nutrition (parenteral) and tube feeding (enteral) through education, advocacy, and networking.”

Mighty Well had the chance to network with various health organizations and businesses that share our similar mission to help patients and their caregivers live a happy, healthy lifestyle.

Here are some highlights from the event, as well as some innovative healthcare products that we know you will LOVE:

1) TOP FAVORITE GROUP FINDS AT OLEY CONFERENCE

G-Pact (Gastroparesis Patient Association for Cures and Treatments, Inc.). An international nonprofit, leading the fight against paralytic conditions of the digestive tract, including, but not limited to, Chronic Intestinal Pseudo Obstruction and Colonic Inertia. Since 2001, they fund research, increase awareness, provide multiple free resources to patients and caregivers, offer support programs, and even advocate on Capitol Hill. I got to meet the founders of G-Pact, a strong group of people who set out to make a difference in the lives of patients, just like Mighty Well. I was inspired by how much they’ve done in such a short period of time and the impact they’re making on patients around the world.

Short Bowel Syndrome Foundation. I was also really excited to meet the team from the Short Bowel Syndrome Foundation! I’ve met many friends who have “ostomies” from Short Bowel Syndrome, and it is great to be able to meet an organization that is making a positive impact in the lives of SBS patients. We are looking forward to future collaborations with them!

 

2) FAVORITE FOOD PRODUCT

Kate Farms® was by far our favorite food partner! They make delicious, allergen-free, meal replacement shakes for patients who require formula to maintain nutrition. Yep, that’s right–that means no dairy, wheat, soybeans, peanuts, tree-nuts, eggs, fish/shellfish, or corn. Not to mention, they use organic, plant-based proteins that have no hidden ingredients, like chemicals, non-nutritive sweeteners, or additives. They use a superfood formula, the Spectra™ Superfoods Blend, which is a combination of phytochemical extracts (active ingredients that support full body health) from 29 fruits and vegetables. Not only are the formulas a great source of protein and fiber, they are also a natural anti-inflammatory! Dairy, gluten and soy can trigger inflammation and upset a sensitive immune system.

Their products are not only a great source of nutrition for people with feeding tubes (as the formula can be used both orally and for tube feeding), but also helpful for the others like me, who have lost weight as a result of being on long-term antibiotics or for patients who don’t use TPN (Total Parenteral Nutrition) or a PICC line for treatment. My favorite flavored drink is vanilla, but their formulas also come in chocolate, coffee, and plain!

 

3) ONCE AGAIN, WE CONFIRMED THAT IV CLEAR™ BY COVALON TECHNOLOGIES IS BY FAR OUR FAVORITE DRESSING PRODUCT!

This dressing has saved my skin and allowed me to maintain a healthy PICC line since September 1, 2016. My favorite product from Covalon is IV CLEAR™, which is an antimicrobial, clear, silicone adhesive securement dressing with chlorhexidine and silver. It not only helps my skin heal, but also relieves me of having to worry about maintaining a safe, secure PICC line. I am happy to admit that because I use Covalon’s dressing, I have never acquired contact dermatitis.

4) MIGHTY WELL’S PICCPERFECT COVER ALLOWS YOU TO ADMINISTER TREATMENT WITHOUT EXPOSING YOUR INSERTION SITE!

Our PICCPerfect covers are made of anti-microbial, moisture-wicking fabric, and not to mention, our patterns are pretty stylish too. See why people at the Oley Conference were raving about our product!

5) THE OLEY LIFELINE NEWSLETTER.

The Lifeline Letter from Oley keeps those on TPN number two up-to-date on the latest product

innovations, amazing stories, and community events. This is a must subscribe!

Clinical Nutrition Week, Orlando FL 2/18-2/21

Clinical Nutrition Week 2017 in Orlando, FL

The American Society for Parenteral and Enteral Nutrition’s (ASPEN) Clinical Nutrition Week (CNW17) is a can’t miss conference for nutrition support professionals. Over 2,000 clinicians and researchers will gather for four days of educational and research programs aimed at improving patient care, on February 18-21, 2017 at the Orlando World Center Marriott in Orlando, Florida.

CNW17 features pre-conference courses, late-breaking research, and opportunities to meet nutrition support professionals from around the world. The pre-conference course, Functional

Medicine: The Optimal Approach to Intestinal Disorders, will provide an introduction to functional medicine and cover topics such as Case-Based Functional Nutrition Approach in a Nutrition Support Patient with Gastroparesis.

 

Visit the official CNW17 site for additional program information and to register.

The PIE FACE CHALLENGE

This article from David Wilson of Itemlive.com introduces a young man named Andrew Billeveau. See the article where Andrew talks about his gastroparesis and how to raise money and awareness he took part in The Pie Face Challenge article. !

web-lorenz_161229_002-695x393
Andrew Billeveau post pie!      [photo by Mark Lorenz from the Itemlive.com article]
The article mentions G-PACT and our own Operations Director Colleen Beener.

Visit G-PACT’s own Pie Face Challenge on Facebook.

The PIE FACE CHALLENGE builds on the popularity of the ALS Ice Bucket challenge of 2015. The rules are simple:

  1. make a photo or video of you smashing a cream pie in your face!
  2. challenge your friends to do the same
  3. make a donation to G-PACT.org
  4. spread the word

gp-pie-face-challenge-flyer

Malnutrition Awareness Week -ASPEN

Malnutrition Awareness Week TM

Date: September 26 – 30, 2016

Website: http://www.nutritioncare.org/maw

Contact Information: (301) 587-6315, info@nutritioncare.org
Join the American Society for Parenteral and Enteral Nutrition (ASPEN) September 26 – 30, 2016 for their fifth annual Malnutrition Awareness Week™.

The purpose of this week is to raise awareness in healthcare professionals to consider assessing and intervening earlier and for the pubic to realize that they need to ask about their nutrition status and advocate for optimal nutrition care as much as possible.
In 2009, ASPEN recognized a need for greater awareness of malnutrition, which is common in hospitalized patients in the United States and is associated with unfavorable outcomes including higher infection rates, poor wound healing, longer lengths of stay, and higher frequency of readmission. Not unexpectedly, these outcomes are associated with increased costs. In some studies, 30-50% of patients become malnourished, often during a hospital stay.
The 2016 week is scheduled to have three webinars* and a chat with the experts

 Improving Malnutrition from the Physician Perspective*

 Combating Malnutrition in Spanish Speaking Population: Available Programs and Resources*

 Malnutrition Interventions and Programs for Older Adults*

 Aging Does Not Matter: Malnutrition in the Aging Population

Visit the official Malnutrition Awareness Week site to register or for more information about the week. Participants will receive continuing education credits. ASPEN is accredited to provide medical, pharmacy, nursing and dietetic credits.

 

G-PACT is sharing this post because we collaborate with ASPEN

 

 

 

Public Meeting on Functional GI Disorders Patient-Focused Drug Development

On May 22, 2015, the FDA obtained patient input on the impact of functional GI disorders on daily life and patients’ views on currently available therapies to treat the functional GI disorders, such as irritable bowel syndrome, gastroparesis, chronic persistent symptomatic gastroesophageal reflux despite standard therapeutic interventions, and chronic idiopathic constipation.  G-PACT was there!

For those who were unable to attend or participate via the webcast, the meeting was recorded and may be viewed here:

Part 1:

https://collaboration.fda.gov/p3xfprr0hlr/?launcher=false&fcsContent=true&pbMode=normal

Part 2:  https://collaboration.fda.gov/p5lp2oxt3wy/?launcher=false&fcsContent=true&pbMode=normal

To read the transcript of the meeting, go to  http://www.fda.gov/downloads/ForIndustry/UserFees/PrescriptionDrugUserFee/UCM448905.pdf

Functional GI Disorders Patient-Focused Drug Development Public Meeting

In less than 2 months, on May 11th, the FDA is holding a public meeting and an opportunity for public comment on Patient-Focused Drug Development for functional gastrointestinal (GI) disorders, including irritable bowel syndrome, gastroparesis, chronic persistent symptomatic gastroesophageal reflux despite standard therapeutic interventions, and chronic idiopathic constipation.

Even if you cannot attend, you can make your voice heard! You can join the meeting via webcast by registering Here.

In addition, you can submit formal comments by going HERE. Click on the green button SUBMIT A FORMAL COMMENT to provide your answers to the questions listed below. This is something EVERYONE can do to help the FDA gather the information they need.

Topic 1: Disease Symptoms and Daily Impacts That Matter Most to Patients

Have you received a diagnosis of a functional GI disorder from a health care provider? If so, please state the condition.

Of all the symptoms that you experience because of your condition, which one to three symptoms have the most significant impact on your life? (Examples may include pain, bloating, constipation, vomiting)

Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of your condition? (Examples of activities may include sleeping through the night, daily hygiene)

How do your symptoms and their negative impacts affect your daily life on the best days? On the worst days?

How has your condition and its symptoms changed over time?

Do your symptoms come and go or are they ongoing? If so, do you know of anything that worsens your symptoms?

What worries you most about your condition?

Topic 2: Patients’ Perspectives on Current Approaches To Treating Functional GI Disorders

What are you currently doing to help treat your condition or its symptoms? (Examples may include prescription medicines, over-the-counter products, and other therapies including nondrug therapies such as diet modification.)

What specific symptoms do your treatments address?

How has your treatment regimen changed over time, and why?

How well does your current treatment regimen treat the most significant symptoms of your disease

How well do these treatments stop or slow the progression of your condition?

How well do these therapies improve your ability to do specific activities that are important to you in your daily life?

How well have these treatments worked for you as your condition has changed over time?

What are the most significant downsides to your current treatments, and how do they affect your daily life? (Examples of downsides may include bothersome side effects, going to the hospital for treatment, restrictions on driving, etc.)

Assuming there is no complete cure for your condition, what specific things would you look for in an ideal treatment for your condition?