Leave a comment

CDC Comes to Indy

Martin Center Sickle Cell Initiative (MCSCI) will hold a town hall meeting with representatives from the community living with Sickle Cell Disease (SCD), their families, researchers and leaders from collaborators including the Centers for Disease Control and Prevention (CDC). The meeting, the first of its kind in Indiana, will take place on April 21, 2016 at 1:30 P.M. at the Marten House Conference Center.

SCD is a common inherited blood disorder in the United States, affecting an estimated 90,000 to 100,000 Americans. The Indiana State Department of Health estimates that there are as many as 1,200 people with SCD in Indiana, with 500 – 600 of them living in the Indianapolis area. In SCD, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle.”

The purpose of the town hall meeting, that will take place the day before the 2016 Indiana Sickle Cell Conference scheduled for April 22, 2016, is to share information about SCD and its impact on patients and families in Central Indiana.

“We are delighted that CDC is coming to Indianapolis to hear directly from members of our community about how Sickle Cell is affecting them,” said Gary A. Gibson, President and CEO of Martin Center Sickle Cell Initiative. “We value CDC’s expertise and commitment to Sickle Cell and look forward to exploring opportunities to work together to raise awareness of SCD and improve the health of this population ,” he added.

“CDC is very concerned about Sickle Cell disease and its impact on individuals, their families and our communities,” said Craig Hooper, PhD., Director of CDC’s Division of Blood Disorders. “We are committed to innovative partnerships with organizations like MCSCI to expand research and services for those with SCD.”

MCSCI is the only agency of its kind in the state of Indiana. It exists to aid and enhance the lives of those affected by Sickle Cell and associated disorders by providing supportive services, education and advocacy.

Leave a comment

New Grants Mean New Opportunities to Make an Impact

In January 2015, Indiana State Representative Gregory Porter, working with MCSCI President, Gary A. Gibson, filed House Bill 1329 in the Indiana General Assembly.   This piece of legislation was intended to add specific requirements to the Sickle Cell program of the Indiana State Department of Health (department). The bill required the Indiana State Department of Health (ISDH) to establish Sickle Cell Disease centers in various regions of Indiana. It was also intended to require ISDH to conduct a study concerning certain aspects of sickle cell disease and treatment.

 

With the assistance of representatives from the Indiana Minority Health Coalition, MCSCI’s President convinced the Chair of the Public Health Committee to give the bill a hearing.  The hearing took place in the Indiana Statehouse on January 20, 2015.  In addition to testimony from Mr. Gibson and others, six (6) MCSCI clients spoke about the need for passage of the bill.  The bill passed out of the Public Health Committee with unanimous consent.  However, it did not survive its trip through the State House and Ways (Budget) Committee.

 

In spite of the bill’s failure to pass the entire legislature, the attention generated by H.B. 1329 raised enough concern within the legislature and ISDH to generate additional funding for the state’s Sickle Cell Program budget.  ISDH issued a request for proposals for “Sickle Cell Broad Scope Services” in the summer of 2015.  MCSCI provided a proposal to provide emergency department Sickle Cell education services.  This project was selected because of long-standing concerns about emergency department care within the SCD patient community.  MCSCI leadership believes that improvements in this area will positively impact the SCD patient’s quality of life.

 

The proposal was accepted by ISDH and MCSCI was awarded a grant to perform these services under the title of “Emergency Department Sickle Cell Education Project.”

 

Also, on November 24, 2014, the Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB) announced a grant opportunity for fiscal year (FY) 2015 for the Sickle Cell Disease Newborn Screening component of the National Hereditary Blood Disorders Program. The purpose of this component is to support the efforts of community-based organizations (CBOs) Like Martin Center Sickle Cell Initiative (MCSCI) to enhance follow-up services for sickle cell patients and to support sickle cell disease counseling, education, referrals to a medical home, and other support services.

 

This grant of the Sickle Cell Disease Newborn Screening Program (SCDNBSP) is intended to enhance CBO’s efforts to provide follow-up services for sickle cell patients and support sickle cell disease counseling, education, referrals to a medical home, and other support services. The goals of the SCDNBSP are for a national sickle cell organization, in part by working with regional and local sickle cell community-based organizations (CBOs) to: 1) create a national effort to develop, implement, and maintain a national strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to assure access to comprehensive care; 2) increase the use of sickle cell educator/counselors (e.g., community health workers); and 3) increase the number of patients with care coordination, follow-up and referral to medical homes for sickle cell patients. The sickle cell educator/counselors will provide care coordination to sickle cell patients in communities by educating patients about sickle cell, linking patients to medical homes and assisting them with other resources in the community to address their health care quality and outcomes. A regional approach will be used for the Sickle Cell Disease Newborn Screening Program. The Sickle Cell Disease Treatment Demonstration Program (SCDTDP) uses a regional model, and the applicant is expected to work collaboratively with the SCDTDP awardees.

 

The Sickle Cell Disease Association of America (SCDAA), of which MCSCI is a chapter member, reached out to its chapters in five regions of the United States to assemble a team that would work on this project. SCDAA, in collaboration with both its members and non-member CBO’s, crafted a multifaceted national program to identify patients with sickle cell disease and link them to high quality care within their communities. The program will utilize the collective impact model strategy to create outcomes and solutions for better access to care within five key regions throughout the US.

 

SCDAA was awarded approximately $2.7 million annually for two (2) years to serve as the National Backbone Organization for the HRSA Sickle Cell Disease Newborn Screening Program. As the national backbone organization SCDAA will work with community-based organizations across the country to implement a strengthened approach to care, collective impact and strategic activities within the Sickle Cell community.  Primary components of the collective impact model include:

 

  1. Support a national structure
  2. Develop and implement a common agenda.
  3. Provide continuous communication.
  4. Conduct reinforcing activities with community based-organizations (CBOs)
  5. Develop and implement a shared measurement system.

 

MCSCI will be working as a subcontractor to the Sickle Cell Disease Association of Michigan (SCDAM) on this project.  SCDAM is a subcontractor to SCDAA National.

 

These two grants will provide MCSCI with the opportunity to create meaningful impact for those living with Sickle Cell in central Indiana.  We are looking forward to doing just that!

Leave a comment

MCSCI Game Night with Indy Eleven

IMG_4749

MCSCI Social Worker, Cortney Owens, talks to Indy Eleven fans about Sickle Cell

Partnership is an important means of getting things accomplished.  That is why MCSCI is proud and happy to be partnering with the Indy Eleven this year.  This partnership includes co-branding of literature, social media promotions and free match tickets for distribution to MCSCI clients and their families.  The icing on the cake was the MCSCI Game Night on July 25, 2015.  That night, the Indy Eleven played to a 1-1 tie with the New York Cosmos.

The Indy Eleven provided MCSCI with a free booth in the Honda Fan Zone where we distributed literature and talked to people about Sickle Cell Disease and Trait.  Our 2015 Child Ambassador, Tairyn Cavilear, gave the first kick at midfield just before the match started.  At halftime, MCSCI President, Gary A. Gibson, was given the microphone to talk about Sickle Cell and what MCSCI does to help those who live with it.  The official attendance for the match was 10,206.  It was a tremendous opportunity to make people aware of Sickle Cell and we are very grateful for the Indy Eleven for allowing that to happen.  It would take many months to reach that number of people at health fairs!  In our view, that is what partnership is all about.

Thanks, Indy Eleven!

Leave a comment

MCSCI Named Indy Eleven Community Partner

Indy11_logo

Martin Center Sickle Cell Initiative has been chosen to be one of this year’s community partners of the Indy Eleven Soccer Team. For each home game throughout the 2015 season, Indy Eleven will feature one local philanthropic, arts or community organization to serve as the Philanthropic Ticket Partner of the match.  As part of the program, the 16 selected organizations will receive recognition on that game’s season ticket artwork and during the corresponding game at Carroll Stadium during a pregame ceremony, in addition to receiving a group discount on tickets for that match at “The Mike.”

Indy Eleven is one of ten teams in the professional North American Soccer League.  It’s vision is to create a team that is representative of Indiana and creates strong emotional connections with its fans. Those connections – embodied in the team’s symbolic name, crest and colors – will be made with Indiana’s youth and adult soccer community and the active young adult urban and ethnic populations. The makeup of the team will reflect the community, so that it can live up to its slogan of “The World’s Game, Indiana’s Team.”

MCSCI is very excited about this partnership and we are looking forward to one of its hallmark features, a Martin Center Sickle Cell game night on July 25, 2015.  During this event, we will be able to spread awareness about MCSCI and Sickle Cell and there will also be an auction of autographed Indy Eleven merchandise from which we will benefit.  In addition to the game night, Indy Eleven will promote MCSCI on social media, and provide a player to serve as a Sickle Cell Ambassador and Grand Marshall of the 19th Annual Sickle Cell 5K Walk/Run.

MCSCI thanks Indy Eleven for its support and we encourage everyone to support the team!

Leave a comment

2015 Indiana Sickle Cell Conference Will Empower Attendees

Martin Center Sickle Cell Initiative (MCSCI) and the Indiana Hemophilia and Thrombosis Center (IHTC) will present the 2015 Indiana Sickle Cell Conference on April 24, 2015.  The conference will take place at the Ivy Tech Community College Corporate College and Culinary Center at 2820 N. Meridian Street.  It will begin with registration and a continental breakfast at 8:00 A.M. and will conclude at 4:30 P.M.  The conference theme, “Empowering our Future,” was chosen to highlight the need to empower physicians and patients as they battle Sickle Cell from their respective positions.

The conference will include both a medical track for health care providers and a community track for SCD patients and their families, social service providers and advocates.  Continuing medical education credits will be available.  Sonja Banks, the President and COO of the Sickle Cell Disease Association of America will be the keynote speaker.  Banks will be joined by local physicians, as well as from around the nation, to discuss clinical aspects of the disease.  Among the nationally known physicians joining the program are Dr. Kim Smith-Whitely of the Children’s Hospital of Philadelphia, Dr. Russell Ware of Cincinnatti Children’s Hospital and Dr. Alexis Thompson of the Ann & Robert H. Lurie Children’s Hospital of Chicago.

The objectives of the conference are:

  1. To alert the Indiana community about the continued presence of SCD and to inform the community about the many lesser known varieties of pain (psychological, emotional, social, economic and spiritual) that accompany the physical pain associated with SCD.
  2. To empower health care providers by providing up-to-date recommended treatment protocols for SCD.
  3. To empower those who have SCD by providing information that allows them to better care for themselves.

Friends of MCSCI know that it is the only agency of its kind in the state of Indiana.  It exists to aid and enhance the lives of those affected by Sickle Cell and associated disorders by providing supportive services, education and advocacy.  The Indiana Hemophilia and Thrombosis Center is committed to providing the highest quality comprehensive healthcare services to patients with bleeding and clotting disorders, and to their families.  The agencies have worked together for several years but this is the first time that they have co-presented this important conference.  The conference is being sponsored in part by Mast Therapeutics, a publicly traded biopharmaceutical company headquartered in San Diego, California.  Mast has developed a pharmaceutical agent called MST-188 and is enrolling Sickle Cell Disease patients in a phase 3 clinical trial study known as EPIC.

Leave a comment

Historic Sickle Cell Legislation in Indiana

HB 1329MCCSI is pleased that State Representative Gregory Porter has submitted a bill to expand Sickle Cell services in the state of Indiana.  We are also grateful that the Chairperson of the House of Representatives Public Health Committee, Rep. Ed Clere, called the bill for a hearing.  The hearing was held on January 26th, 2015 in the house chambers of the Indiana Statehouse.

IMG_0185

In addition to the testimony of MCSCI President, Gary A. Gibson, and Chris Roberson of the Indiana Hemophilia and Thrombosis Center, the committee heard remarks from six MCSCI clients, including Shonda Ware (shown here).  This was the first time that many on the committee had heard this much about Sickle Cell Disease.  It was obvious that they were moved by the testimony of those who spoke.  In fact, at the time of this report, two more representatives have signed on as co-authors since the hearing.  That is a very good sign.

MCSCI is continuing to work with the bill’s author and others to ensure that the needs of our Sickle Cell community are not only heard and understood but responded to, as well.

1 Comment

MCSCI Announces 2015 Child Ambassador

Tairyn Cavilear_2015 Child Ambassador_v2 Martin Center Sickle Cell Initiative is pleased to introduce you to Tairyn Cavilear, our 2015 Child Ambassador. Tairyn is twelve years old. As you can see from the photo, she is a very bright and cheery young lady. We think that she will be a wonderful ambassador for our Sickle Cell family. As MCSCI’s Child Ambassador, she will help us spread Sickle Cell awareness and help us raise funds to support the needs of our many clients. We are grateful to Tairyn’s parents for allowing her to work with us in our very important mission of aiding and enhancing the lives of those affected by Sickle Cell and associated disorders. Look to see more of Tairyn as the year progresses.