World Sickle Cell Day: Why It Matters to Everybody

06/19/2015 05:33 pm ET | Updated Jun 18, 2016

Your baby is crying, and you don't know why. You've followed the rules for Parenting 101 and your little one is fed, dry and cuddled. Yet, he's still wailing and inconsolable. Panicked, you take him to the ER where he is admitted. The first of many hospitalizations.

This is what happened to Santonio Holmes. Of course, you know him as NFL Super Bowl XLIII MVP, but I also know him as the father to a child diagnosed with Sickle Cell Disease (SCD) and the founder of the Santonio Holmes III & Long Foundation. His foundation works with local SCD organizations to provide grants to help families impacted by this disease receive proper health care, medical therapies, treatment and education on how sickle cell disease will affect their child.

As a board member of the Sickle Cell Disease Association of America and as a parent who was screened for the disease when I was pregnant with my first child (who was also assessed for the disease through the Newborn Screening Program), I, too, recognize the need for awareness and legislation related to this disorder.

According to the World Health Organization, Sickle Cell Disease is an inherited blood disorder affecting red blood cells and is the most common genetic diseases in the U.S. People with SCD make red bloods cells that contain abnormal hemoglobin -- the protein that carries oxygen from the lungs to the rest of the body. Sometimes the affected red blood cells can become shaped like a sickle, or crescent, rather than the normal round shape of healthy cells. Sickle cells can then block the flow of blood through the body, damaging lung tissues, and causing incredibly painful episodes in the arms, legs, chest and abdomen. Adults and children with SCD are often at risk for strokes.

Although Sickle Cell Disease is largely thought of as a disorder occurring only in African Americans, it affects other ethnicities, including those of Mediterranean, Caribbean, South American, Southern European, Indian and those of Middle Eastern descent -- really, anyone of color can inherit this condition.

The United Nations (UN) named June 19 World Sickle Cell Day with the goal of raising awareness about this major health issue. The World Health Organization (WHO), the UN's health arm, urges countries affected by sickle cell to establish health programs at the national level and promote access to medical services for people affected by the disease.

Here in the United States, increased awareness and access to knowledgeable health care practitioners are still needed. According to the Centers for Disease Control and Prevention (CDC), it is estimated that 100,000 individuals are affected by SCD in the U.S. and that approximately 3 million people in the U.S. are carriers. Of the people affected by the disease, somewhere between 65 percent - 70 percent are classified as underserved or economically disadvantaged. The mental and financial cost on the families battling SCD is incredibly high.

With advanced medical care, the life expectancy for those with Sickle Cell Disease is increasing, but currently there is no cure. Unfortunately, the reality of those affected is a lifetime of pain and difficulty. Anytime people with SCD have a crisis related to the disease, they are hospitalized, often for weeks at time. Children miss school, causing them to fall behind. Expensive blood transfusions and medicines are needed. Many people cannot cover the cost, even with insurance.

The Santonio Holmes III & Long Foundation is doing its part to raise Sickle Cell Disease awareness. They are working to provide financial support for treatment options, necessary medication, and tutoring so kids don't fall behind in school.

More funding and research are needed on the national level for Sickle Cell Disease and with the help of the Sickle Cell Disease Association of America, the Sickle Cell Disease Congressional Caucus, Rep. Michael Burgess (R-TX) and Rep. Danny Davis (D-IL), The Sickle Cell Disease Research, Surveillance, Prevention and Treatment Act of 2015 (H.R. 1807) was introduced in April, but it has only been referred to committee and has seen no further action. At this time there is no companion bill present in the Senate. Additionally, the OPEN ACT was incorporated into the 21st Century Cures Act (H.R. 6), a broader piece of legislation that has already passed through the House Energy and Commerce Committee (with unanimous support) and will likely head to the House floor for a full vote next month. The 21st Century Cures Act contains a wide variety of provisions that could be a positive change for the rare disease community.

Sickle Cell Disease affects so many -- from our babies trying to survive to adults dealing with painful episodes and complications. We need legislation, research and funding to aid those facing this disease. You can help! To do your part, contact your member of Congress by mail, email, or phone to support the passage of the treatment act. Together, we can get this serious and far-reaching disease the attention it deserves.

Edda Collins Coleman is founder and managing director of The 316 Group, a consulting firm based in Alexandria, Va., advising clients in the health, tech, energy and education verticals.