Sickle Cell Disease Association of America, Inc. (SCDAA)
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Affordable Care Act (ACA) by the United States Supreme Court
The Sickle Cell Disease Association of America, Inc. (SCDAA) applauds the upholding of many of the provisions of the Affordable Care Act (ACA) by the United States Supreme Court. The ACA represents a significant victory for individuals with chronic diseases such as sickle cell disease. Fear of moving from your pediatric doctor to an adult doctor because you may not have insurance may be unnecessary under the ACA. 
How does the ACA protect you as an individual living with sickle cell disease? SCDAA wants to point out how ACA can improve the healthcare of people with sickle cell disease.  
1.       Insurers can no longer deny coverage to anyone with a chronic or pre-existing health condition such as sickle cell disease. Children and adults are now able to get insurance that covers treatment of their illnesses.
2.       Lifetime caps on coverage have been removed and insurers have to set annual limits on essential health services at a minimum of $750,000. 
What does this mean? This means that health insurance companies cannot deny coverage to anyone with a chronic health condition such as sickle cell disease. Furthermore, your health insurance company can no longer set a limit on how much of your health care costs they will pay forever, this is known as "lifetime cap". Currently, the limit on how much they will pay for your heath care in each year has been set at $750,000. The long-term goal of ACA is to eliminate annual limits that are currently practiced by insurance companies from imposing any annual limits at all. SCDAA will closely monitor and report to you and our member organizations as to the progress the ACA law makes in removing these annual limits completely.
It is imperative that you understand your current healthcare use and the benefits afforded by your current health plan. You may need to find a health plan that meets your needs as some health plans are excluded from this annual limit (i.e. they are grandfathered in) and unless they volunteer to comply with the annual limit on their own, they will not have to comply).
3.       You may qualify for 50% discount on brand-name drugs if you are enrolled in Medicare Part D that covers prescription medications once you reach the “donut hole.”
What is the donut hole? The donut hole is a gap in prescription drug coverage where you pay all of the prescription drug costs.  If you have Medicare Part D with your health plan and you have spent $2,840 for covered medications, you are in the donut hole. Prior to the enactment of the ACA, you would have had to pay the full cost of your prescription drugs while in the donut hole but now you get a 50% discount on covered brand-name prescription medications. The donut hole still continues until your total out-of-pocket cost reaches $4,550. This annual out-of-pocket spending amount includes your yearly deductible, copayment, and coinsurance amounts.
When you spend more than $4,550 out-of-pocket, your prescription medication plan pays most of the costs of your covered medications for the remainder of the year and you may be responsible for a small copayment.
Many adults with sickle cell disease will find it difficult to meet the yearly out-of-pocket costs for prescription medications. Inquire through your member organization or doctor about patient medication assistance programs for which you may qualify.
4.       Preventive Services, regular check-ups with your primary care doctor as well as your hematologist are very important for overall health maintenance of people with sickle cell disease. The ACA recognized the importance of preventive care and therefore has eliminated a co-payment or deductible for services like mammograms and colonoscopies. 
5.       If you have had trouble getting insurance because you have sickle cell disease, a pre-existing condition, the ACA has created a special insurance called Pre-Existing Condition Insurance (PCIP) available to people with pre-existing conditions that provides immediate access to insurance until the new law covers everyone with such conditions in 2014.  
6.       If you have been dropped by your insurance plan because of costly care or for any other reason, the ACA protects you by stopping insurers from eliminating your health coverage when you get sick.  
7.       Many people do not like leaving the doctor that they have grown to know and trust. Before ACA, health plans could switch your doctor without your knowledge. The ACA allows you to now choose and keep your primary care doctor. 
8.       Women with sickle cell disease and who are pregnant, should be seen by an obstetrician who specializes in high-risk pregnancies. Under the ACA, women can go directly to their OB/GYN without a referral.
9.       Most people with sickle cell disease seek care in safety-net hospitals. This means that these are not for profit hospitals with the tax designation 501(c)(3). Under ACA there are stringent care and financial standards for not-for-profit hospitals now in place to better protect patients. SCDAA wants to make sure that you are aware of the following:
i.                     Not-for-profit hospitals must have written financial assistance policies that clearly state eligibility guidelines and how to apply;
ii.                   You are protected from being overcharged;
iii.                  You are protected from extraordinary collection actions (i.e. liens, lawsuits);
iv.                  Non-for-profit hospitals must work with community members and public health experts to assess the needs of the community, develop a plan to address those needs, and make the assessment widely available to the public.
10.    Young adults are able to stay on their parents’ insurance until their 26th birthday. This includes young adults with a chronic illness such as sickle cell disease.
The Affordable Care Act is an outstanding health care law and helps to ensure that all people have health insurance that allows access to preventive care and health services specific to their needs from birth to adulthood. The SCDAA will keep you updated with changes to the law that may directly impact how you receive health services, pay for prescriptions or find a doctor.
For more information, please contact the Sickle Cell Disease Association of America at 410-528-1555 or by email at

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