Primary Immune Tribune
November 2016


Healthcare in the Post-Election World
IDF Remains Focused on Putting Patients First

Since the election, the Immune Deficiency Foundation has continued to focus on what will happen with healthcare coverage and access under the new administration. There are many unknowns at this time, but we want to remind members of the primary immunodeficiency community that it is still vital that those who need insurance through the Marketplace enroll, regardless of the possible repeal of the Affordable Care Act (ACA). You may enroll online at: www.healthcare.gov/get-coverage. The deadline for enrollment is January 31, 2017

It is important to remember that changes to the ACA will not be immediate, and those who rely on insurance through the Marketplace (or exchange) should proceed as they previously would until told to do otherwise. 

IDF continues to be committed to working with other patient organizations to make sure our patients are not forgotten. As more information becomes available regarding any proposed changes in healthcare law and healthcare plans, we will be there advocating for our community, and we will share information through our various IDF communications. Remember, “Put Patients First!”

Click here to sign up for IDF Action Alerts to keep in the know!



The 2016 IDF Health Insurance Survey Is Here!
Take Part & Provide Your Feedback

Since 2014, over 2,300 members of our community responded to IDF’s health insurance surveys and shared their health insurance experiences. Now, an email invitation for the 2016 IDF Health Insurance Survey is coming your way! Once you receive your invitation, please click the link provided at the end of the email to participate. The information you provide will better inform and guide IDF efforts as we work to improve healthcare delivery to our community. Your thoughtful and honest responses are very important and vital to our research, now more than ever. 

Please contact IDF if you have any questions: 800-296-4433 or info@primaryimmune.org. Thank you in advance for participating!



Steps Towards a Better Future Continue
Holiday #WalkforPI Fundraising Ideas

Keep the momentum going for IDF Walk for Primary Immunodeficiency and help create a better future for people with PI! Our incredible community has already raised over $1 million through IDF Walk for PI 2016, but you can continue to fundraise and meet your goals until December 31, 2016. Below are some holiday fundraising ideas to help you. 

Hold a Sale That Gives Back

  • Bake Sale – Everybody loves treats around the holidays! Bake some cookies and decorate them with zebra stripes, and charge a few dollars per snack!
  • Warm Drinks – 'Tis the season to stay cozy while out shopping. Set up a table in a local shopping center (with permission), and sell hot coffee or cocoa to the chilly shoppers!
  • Gift Wrapping Services – During the holidays, people get tired of wrapping presents. Offer the service of wrapping packages, and help your friends and family save time while raising money for your team!

Thank You for Making a Difference!
Thank you for supporting IDF Walk for PI and making a difference for generations to come. Don’t forget to share your progress on social media and tag IDF Walk for Primary Immunodeficiency in your posts using #walkforPI, #THINKZEBRA, and #ZebraStrong! Best of luck!

2016 National Presenting Walk Sponsor
Shire

2016 National Walk Sponsors
Coram CVS | Specialty Infusion Services
CSL Behring
Grifols
Horizon Pharma
IgG America | ASD Healthcare | US Bioservices
Kedrion Biopharma
Octapharma
Option Care

Learn more about IDF Walk for PI at:
www.walkforPI.org



Fourth Edition Now Available
IDF Guide for Nurses Immunoglobulin Therapy for Primary Immunodeficiency Diseases

The IDF Guide for Nurses Immunoglobulin Therapy for Primary Immunodeficiency Diseases – Fourth Edition is now available. Developed by the IDF Nurse Advisory Committee, the guide includes general information about primary immunodeficiency diseases, delivery of immunoglobulin (Ig) replacement therapy, product selection and characteristics, troubleshooting intravenous and subcutaneous Ig therapy, and more.

This new edition includes changes in dosing and delivery as well as additional instructions for teaching patients. The sleek design and pocket size make it easy to use for busy nurses. This popular guide provides direction for nurses to administer Ig replacement therapy in the safest and most effective way.

This is a must-have resource for all nurses who care for patients with PI. If you are a patient and nurses you know don’t have a copy, we encourage you to share this helpful guide with them. Download the PDF or order print copies at www.primaryimmune.org/idf-publications

This publication has been made possible through a generous grant from CSL Behring.



Would You Like to Assist IDF Staff Members at Local Patient Meetings?

For the volunteer who loves to get involved, serving as an Event Facilitator is a great fit for you! We are searching for 2-3 volunteers to lend a hand at one of our upcoming meetings in one of the following locations:

Albuquerque, NM – December 3
Bellevue, WA – December 3
Chandler, AZ – December 3
Henderson, NV – December 10
Sarasota, FL – December 10

Responsibilities will include greeting attendees and assisting staff with logistical tasks.

Volunteers should be able to assist between 9:00 am-3:00 pm for each meeting. If you live in or near any of the cities listed above and want to learn how to sign-up for this volunteer role, e-mail volunteer@primaryimmune.org.



Donor Spotlight: Sue & Rich Petrelli
“We want IDF to thrive.”

When someone generously makes a gift to IDF, not only are we extremely grateful, we’re also interested in what motivated them to donate. Have they or a loved one been affected by a primary immunodeficiency? Have they benefited from an IDF program or resource? 

Recently, Sue Petrelli told us why she and her husband Rich chose to donate to IDF. 

“My husband Rich and I live in Elgin, Illinois and have a 21 year old son, Nicholas, and a 25 year old daughter, Kristin. 

 
The Petrelli Family: (from left) Rich, Sue, Kristin and Nicholas Petrelli.

Kristin has a history of chronic sinus and ear infections along with chronic cough and skin diseases. When Kristin was 12, we were referred to Children's Memorial Clinical Immunology Department. After a series of tests and CT scans, the immunology team informed us that our daughter had Hypogammaglobulinemia, or Common Variable Immune Deficiency (CVID), a type of primary immunodeficiency (PI). The doctor did her best to explain everything to us, but of course we still had a million questions, so she recommended we get in touch with the Immune Deficiency Foundation for additional resources.

The minute we got home we went directly to IDF’s website, www.primaryimmune.org, to learn more about the implications of Hypogammaglobulinemia/CVID. The website was a goldmine of information for us as parents who had never heard of this disease - that’s how we were welcomed into the IDF community!

Click FULL STORY to read more.


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IDF Research Grant Program
Submission Deadline January 31, 2017

The Immune Deficiency Foundation is currently accepting applications for a seed grant program to encourage and support patient-oriented research on primary immunodeficiency diseases (PI). This initiative will award grants that will support well-defined research projects that have a specified benefit for improving the treatment, health, disease management or diagnosis of persons with PI. Consideration will also be given to studies that contribute to the body of medical knowledge in PI.

The program is open to applicants currently based in the U.S. and will consist of one-year grants. Award values are from $25,000 - $50,000, and a somewhat higher level of support is available for a few exceptional proposals. Submission deadline is January 31, 2017.

Click here for complete details or to apply now.



IDF Young Adult Webinar Series
Videos Now Available Online

The years of your life when you’re determining who you are and who you want to be can be challenging, which is why having a community to support, guide and answer your questions can be crucial to growth and success.

With this in mind, the IDF Young Adult Webinar Series was developed to specifically meet the needs and interests of young adults (ages 18-30) living with a primary immunodeficiency. In 2016 five live webinars were held. Presenters and participants alike asked and answered questions, discussed concerns, shared stories, and connected with people who are living with the unique challenges that young adults with PI face.

To date, IDF has posted these webinar recordings on the IDF website, and they are available for anyone to view. These webinars cross a wide range of topics for young adults, including:

  • Managing Your Career as a Young Adult with PI
  • Fitting Your Medical Care into a Busy Life
  • Health Insurance – Get the Facts
  • Family Planning and PI
  • Balancing Your Health and Your Social Life

To learn more about this program or to listen to webinar recordings, go to: www.primaryimmune.org/young-adult/webinars.

This program is supported by a charitable donation from CSL Behring.



Since You Asked
Question & Answer

Do you have a question you want answered? Ask IDF! Click here to submit your question through our website. 

Q: I just changed jobs and have to choose a new insurance plan. My current plan includes all of my doctors who I have been with for over 5 years and covers my immunoglobulin treatments at a very affordable price for me. I want to have the same type of coverage. How do I know which plan will be the best for me?

Q: Is there anything new that we need to know about the flu vaccine for this year? I have Specific Antibody Deficiency, and I want to make sure me and my children take the appropriate measures to be protected.

Click FULL STORY to see the answer to these questions.


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Primary Immune Tribune is sponsored by an educational grant from Grifols.


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