HFGF ConnectionsThe Quarterly Newsletter of the HFGF Summer 2020 Volume 33 Issue 55

In this IssuePage 1Donations Urgently NeededPage 2Calendar of EventsPage 3HFGF Volunteer HonoredPage 3Volunteer Programs Restart

TOLL FREE 800-293-6527www.HemophiliaFlorida.org

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Page 4-5From The NursePage 6Save The Date!

Because of the many problems caused by the Coronavirus pandemic, the needs of the bleeding disorders community have greatly increased. Compounding the problem of in-creased need is the fact that HFGF’s ability to hold live fundraisers has decreased at the same time.

Can you find it in your heart to donate now to the Hemophilia Foundation of Greater Florida?

Your donations are what make our educa-tion, information, advocacy and Emergency Financial Assistance programs possible.

It is easy to donate. Simply go to hemophiliaflorida.org/donate/.

Or you may choose to participate in one of our virtual or live fundraising walks (See Page 6 in this newsletter for a list of dates for the walks.)

Finally, you can choose to donate to the HFGF and send a Lovegram via email and/or social media to some-one during this difficult time. Just go to hemophiliaflorida.org/hfgflovegram/ and fill out the form.

Donations Urgently Needed NOW!

Page 6Upcoming Fundraising OpportunitiesPage 7Social Work ResourcesPage 8Advocacy: Fighting To Stop Fail First Therapy

HFGF ConnectionsPublished quarterly by

The Hemophilia Foundation of Greater Florida

Board of DirectorsPresident Pete VrochopouloasVice President Mike Berkman Secretary/TreasurerEileen GregoryEd BookbinderHector CartagenaJoe Riggs Jose Villarreal Charris

StaffExecutive Director, Fran HaynesDirector of Development and Strategic MarketingLeah NashSocial Worker, Dina Richardson, LCSWOutreach Nurse, Leanne Buchanan Office Administrator, Shannon BaidenmannDevelopment AssistantKatherine Massey

Physical and Mailing AddressThe Hemophilia Foundation ofGreater Florida1350 Orange Ave. Suite 227Winter Park, Florida, 32789Tel. 407-629-0000Toll-Free 800-293-6527Fax 407-629-9600email info@hemophiliaflorida.orgweb www.hemophiliaflorida.org

MissionThe mission of the Hemophilia Foundation of Greater Florida is dedicated to improving the quality of life for people with related bleed-ing disorders and their families through education, information and referral services, advocacy and research.

DisclaimerThe material provided in HFGF Connections is for your general information only. HFGF does not give medical advice or engage in the practice of medicine. The HFGF does not recommend partic-ular treatments for specific indi-viduals and recommends that you consult your physician or treatment center before pursuing any course of treatment.

Executive Director’s ColumnDear Friends,

I hope this newsletter finds you and your family healthy and well. Everyone is experiencing sad and strange times. The HFGF is here to offer virtual programs, emergency financial assistance and volunteer opportunities.

We are so bummed that we could not have Camp Spirit live this summer. We hope you are enjoying virtual camp, now through August 7. In the future, we will once again have fun activities and opportunities for everyone to get together live. Until then, we are offering fun virtual programs. Check out our calendar of events for our virtual programs.

I hope everyone enjoys summer. Do not forget to mark your calendars for upcom-ing events including the Creepy Crawls in Jacksonville and Orlando and the Flight for Tomorrow Invitational Golf Tournament.

Warmest Regards

Virtual Summer Camp. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Now thru August 7, 2020

Challenge Accepted Virtual Family Program. . . . . . . . . . . . July 14, 2020

HFGF Board of Directors Meeting. . . . . . . . . . . . . . . . . . . . .July 19, 2020

National Hemophilia Foundation Virtual Annual Meeting . . .August 5-8, 2020

Family Retreat Weekend. . . . . . . . . . . . . . . . . . . . . . . . . . . . September 11-13, 2020

Jacksonville Virtual Creepy Crawl. . . . . . . . . . . . . . . . . . . . . October 17, 2020

Orlando Virtual Creepy Crawl. . . . . . . . . . . . . . . . . . . . . . . . .October 24, 2020

Flight for Tomorrow Golf Tournament. . . . . . . . . . . . . . . . . . .October 26, 2020 – Oldsmar Florida

Tampa Virtual Superhero Walk. . . . . . . . . . . . . . . . . . . . . . . . November 14

Gainesville Gator Clot Clot. . . . . . . . . . . . . . . . . . . . . . . . . . . .December 19

RSVP to info@hemophiliaflorida.org for login informationCLICK HERE to subscribe to our email to receive notices and updates of all our upcoming programs and events

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HFGF Volunteer Honored

Facebook.com/hemophiliaflTwitter.com/hemophiliaflInstagram.com/hemophiliaflorida

Follow/Like HFGF on Social Media! HIGH SCHOOL STUDENTSEARN COMMUNITY SERVICE HOURS

VOLUNTEER FOR THE HFGF

CONTACT US AT 800-293-6527 or info@ hemophiliaflorida.org

This summer is going to be an exciting one for the HFGF as it revives its volunteer program. The new program hopes to recruit, train, and retain volunteers in many areas of need throughout the nonprofit.

From social media ambassadors, who help spread the word about our events online, to community liaisons, who repre-sent the HFGF at tabling events and fairs, volunteers will have an opportunity to use their skills and talents to advance the HFGF’s mission while helping the organization grow and move forward in these unprecedented times.

One of the most valuable assets in any new volunteer program, especially now, is innovation. A robust recruiting plan coupled with new communication tools to help orientation and communication become seamless is at the heart of this new program. Tools like Zoom make everything from volunteer orientation to planning committee meetings both easy to set up and convenient to conduct.

With the new volunteer program in place, the HFGF expects that events like the fundraising walks will have the help of new volunteers, both for planning and for the days of the events. The same can be said for the many other annual events that the foundation holds. More importantly, volunteers will be recruited to help in the day-to-day operations of the non-profit, in areas such as marketing, social media, and advocacy. If you have any questions, you can contact Development Assistant Katherine Ramirez Massey by email at events@hemophiliaflorida.org.

It’s an exciting time to become a volunteer! To apply for volunteer opportunities, visit hemophiliaflorida.org/volunteer/ and click on “Volunteer Now!”

Congratulations to longtime HFGF volunteer Javier Aguilu, who was recently recognized by Volunteer Florida in their 30 in 30 campaign, which honored the contributions of 30 volunteers from all around the state of Florida.

Javier, who has been part of the HFGF volunteer family for more than 10 years, provides valu-able work for the foundation including fundraising, helping at our walks; advocacy, manning information tables at events; and translation services for members of the bleeding disorders community who do not speak English.

Javier has Hemophilia A. When he learned of the recognition his work had received, he responded humbly as always, saying “I feel proud and honored for having been selected, knowing that there are many volunteers that deserve this recognition better than me.”

If you would like to volunteer for the Hemophilia Foundation of Greater Florida, see the story below.

Volunteer Program Set to Restart This Summer

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From the NurseBy Leanne Buchanan, R.N.

Summer is upon us and that means two things: travel and hurricanes in Florida. Below you will find the important in-formation needed to stay prepared during this time.

Emergency PlanningWhether you are planning for a ma-jor disaster or an unexpected trip to the emergency room (ER), planning for an emergency is essential.

Here are the essential steps peo-ple with bleeding disorders should take to prepare for an emergency:

• Wear a medical alert ID bracelet or necklace.• Pack a Go Bag with factor and supplies, to have ready

at any time, so you can grab it and go.• Keep multiple ice packs in the freezer.• Keep extra cash in a safe and consistent place so you

will remember where it was stored. (Remember, youmay not have time or be able to use an ATM machinein an emergency, like an evacuation or power failure).

• Keep as much factor and supplies on hand as yourhealth insurance will allow (at least a 2-week supply).

• Take factor and supplies with you when you leavehome.

• Keep important phone numbers (e.g., your Hemophil-ia Treatment Center [HTC], home care company, phy-sician’s office, health insurance company, local ER)in multiple locations: on the fridge, in your wallet, inschool/work bags, in your go-bag, and with your carregistration papers.

• Teach extended family and friends how to administerfactor (called an infusion) to you in case you are un-able to do it yourself.

• Keep a family manual—a reference notebook con-taining pertinent medical information, directions onmixing and infusing factor, maps of your area showingthe location of your HTC/hospital, important phonenumbers, diagnosis and treatment regimens, and lo-cation of a backup HTC.

• Keep an infusion log and take it with you in case youmust evacuate your area.

• Rotate supplies regularly according to expirationdates.

• Program 1-800-42-HANDI (1-800-424-2634) and yourHTC number into your home and cell phones in caseyou must evacuate and need information on availableHTCs in other areas.

• Contact your local emergency management office orpublic health department for information on shelter-in-place and other safety procedures for your area.

Source: National Hemophilia Foundation

The Go BagFor the person with a bleeding disorder the Go Bag should always stay packed and ready. You never know when an emergency will arise, and you will have to leave in a hurry. The NHF recommends the following items be included in your Go Bag.

• Factor• Syringes• Saline• Heparin• Alcohol Wipes• Butterfly Needles/Port Needles• Gauze• Co-Ban or Co-Flex• Sharps Container• Sterile Dressing Change Kits/Port Access Kits with

Sterile gloves and mask• Infusion Log• Hand soap and sanitizer• Travel letter from HTC• Band-aids• ACE bandage• Tourniquet• Ice packs – instant disposable ice packs• Luggage tag on the bag

Source: National Hemophilia Foundation

Wearing a Medical Alert ID

I have included this information on the Medical Alert because everyone needs a reminder. If you do not have a Medical Alert bracelet, please contact me at leannebuchanan@hemophil-iaflorida.org.

Wearing a medical alert ID could save your life in an emergency. After a car accident or other serious injury, medical personnel need to know if an unconscious or noncommunicative per-son has a bleeding disorder. To ensure potentially life-saving time is not wasted, make sure your medical information is easy to find by wearing a medical alert ID. Be certain the ID is easy

to see and identified as a medical alert ID—you don’t want emergency personnel to mistake your medical ID for a piece of jewelry and overlook the important information.

Although you do not want your medical alert ID mistaken for a piece of jewelry, you do not have to sacrifice style com-pletely. Many medical alert ID companies now make IDs in a variety of styles. For example, you can choose to wear a medical alert ID as a traditional metal necklace or bracelet, a beaded bracelet, a sports band, or a watch. Whichever look you choose, make sure the medical symbol and engraved information are prominent and easy to read.

Stay safe everyone and have a great summer.

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From the NurseBy Leanne Buchanan, R.N.

cont’d from page 4

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Take Part in Upcoming Fundraising OpportunitiesOrlando Creepy Crawl will be held October 24.This walk will be virtual.

Jacksonville Creepy Crawl October 17, 2020This walk is virtual.

Tampa Superhero Virtual Walk November 14This walk will be virtual.

Gator Clot Trot December 19 Holiday party follows. Currently, This walk is scheduled to be live.

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Social Work ResourcesBy Dina Richardson, MSW

It is summer, and I am back from maternity leave! While I’ve been away, a lot has changed in our world, particularly with the pandemic. I want to encourage anyone who is needing assistance to please contact me. I can provide assistance including finding local resources; connecting with a Hemophilia Treatment Center (HTC); financial assistance; and men-tal health support.

If you’re seeking financial assistance from us, please visit the Emergency Financial Assistance Application on our web-site to complete the application and to submit any supporting documents that are requested.

We are working on getting a HIPAA compliant way of using video chat so please be on the lookout for that update. HFGF is here for the bleeding disorders community, please don’t hesitate to reach out!

I am available by phone at (407) 629-0000 or email me at DinaRichardson@hemophiliaflorida.org.

The Hemophilia Foundation of Greater Florida is a 501c3 nonprofit organization that has supported the bleeding disorders community throughout the state of Florida since its founding in 1996. For more than 20 years, we have been helping those living with and affected by bleeding disorders live without limits through much needed services and programs.

Mission StatementOur mission is to improve the quality of life for people with bleeding disorders and their families through education, information and referral services, advocacy and research.

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The Hemophilia Foundation of Greater Florida (HFGF) has been fighting for your legislative rights for years. This will be the fifth year fighting for the right for your hematologist to treat you the way that he/she sees fit. Do you think that it is fair for insurance companies to have a say in how you are treated for your bleeding disorder? Does it feel right that someone unaware of your medical history dictates what medications you receive?

Should an insurance company have the final prescriptive authority over your physician? Of course not. HFGF has been working hard to educate legislators about this issue called step or “fail first” therapy. It is called “fail first” therapy because insurers insist that the use of a different drug than the one that your doctor wants to prescribe, usu-ally less expensive, must fail first in order for the patient to receive the treatment that his/her physician wants to prescribe. Think about that for one moment: a patient must fail first on a prescription which was not what the physician originally ordered. This seems to place an unreasonable burden on both the chronically ill patient and the physician.

HFGF hopes that 2021 will be the year that your legislators stand up for your healthcare rights. The plan is to find legislative sponsors for the bill again and to explain to all Florida legislators what step/fail first therapy is and why it is reprehensible for patients, not just those with bleeding disorders. In order for a bill to move forward, it must be voted through specific committees before making it to the Senate and House of Representatives floors. Only then can a bill restricting step/fail first therapy become law, ensuring the right for physicians to prescribe without restrictions from insurers.

This is where you come in. We need people from the bleeding dis-orders community to come forward and be willing to talk to your per-sonal legislators about what it’s like to live with a bleeding disorder; educate them about what step/fail first therapy is, and ask them to move the bill forward when they see it in their committees. Passing a bill prohibiting fail first therapy won’t only help constituents like you, it could help anyone who needs ongoing treatment.

If you are willing to talk to your legislator about step/fail first therapy and educating him/her about living with a bleeding disorder, con-sider becoming a Bleeding Disorders Coalition of Florida Advocacy Ambassador by emailing your interest to info@bleedingdisordersco-alitionofflorida.org. If you have experienced step/fail first therapy and would like to share your story, please indicate that as well.

Advocacy: Fighting to Stop Fail First Therapy

Don’t think that step/fail first therapy could affect you? Read Natalie’s story:

Natalie Rubin has first-hand knowledge of step therapy, the controversial treatment plan designed to save insurance companies money. Diagnosed at age 12 with type one Von Willebrand and a patient of Ehlers Danlos syndrome, a

connective tissue disorder that brings with it illness on a regular ba-sis, Natalie is now speaking out against the therapy. “The goal is to get rid of step therapy all together,” says the University of South Florida freshman. “Step therapy is not effective and not helping any-body.”

Advocating on behalf of the Bleeding Disorders Coalition of Florida (BDCF), Natalie says when she was in junior high school her insur-ance company wanted her to take an anti-depressant for her Ehlers Danlos instead of her prescribed Lyrica.

“There were side effects, and I missed a lot of time in school be-cause of it,” she explains. “I was sick, and I had an abnormal gait that made me wobbly. Not good for someone with a bleeding disorder.”

HFGF Executive Director Fran Haynes says these protocols can create life threatening problems by preventing patients from gaining access to the most appropriate medication for their condition. Fur-ther, for a member of the bleeding disorders community, step ther-apy is always inappropriate because the consequences of failure are too serious. HFGF is a partner in BDCF, along with the Florida Hemophilia Association.

“The risk of a major bleed or cumulative damage from repeated bleeding episodes is too high,” Fran says.

BDCF is currently supporting two bills in the Florida legislature that deal with step therapy. If step therapy were to be allowed to con-tinue, the BDCF asks that it be subject to reasonable constraints, including patient exceptions and covering the provider-prescribed medication. At least 26 states have enacted some form of step ther-apy protections.

“Doctors should have the final say on whether a non-preferred drug may be dispensed,” notes Fran.

“The doctor wants you to take one drug, but the insurers won’t cover it unless you fail with others first,” adds Natalie. “They claim it works. It does not. It’s not the truth.”

As Solid as The Ground We Walk On

HFGF is here for you. Our mission is to provide services such as emergency financial assistance, Camp Spirit tuition, MedicAlert identifications, comfy caps, educational programming, and more. To do so, HFGF must fundraise. We need your help to make that difference for our HFGF families. Have you heard of the saying, “We are as solid as the ground we walk on”? It means that we must have a foundation to stand on. This is where you come in.

If you can help your blood brothers and sisters, please do. HFGF gives you opportunities to contribute financially and to support each other. We have a calendar of fundraising events (see page 6) that you are personally invited to. You can register and start fundraising now.

Thank you in advance for being part of the foundation that HFGF families need. When you donate or participate in fundraising events, you are lifting up people in the bleeding disorders community who need it. Due to COVID-19, 2020 is an especially important time to give.

Your gift could be helping someone survive.

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