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Social Security Disability for HCM in the USA

Qualifying for Social Security Benefits with HCM
 
HCM, or hypertrophic cardiomyopathy (or hypertrophic obstructed cardiomyopathy), affects between 1 in 200 and 1 in 300 worldwide.  If you have HCM and you are unable to work due to severe symptoms, you might be eligible for Social Security disability benefits in the United States. The Social Security Administration (SSA) offers monthly financial resources for people who are unable to maintain employment due to a serious illness.
 
Medically Qualifying for Social Security Disability Benefits
 
Medical qualification is critical for every disability claim. Without sufficient medical evidence proving your disability, you will not be approved. The SSA uses its own medical criteria laid out in a guide known as the Blue Book to evaluate all disability applicants and approve claims accordingly. HCM does not have its own listing in the Blue Book, but the SSA does state that it will look to four separate listings to determine if you qualify. While we may not agree these are the appropriate criteria for HCM disability determination it is the current policy. The HCMA is working with clinicians and researchers who are HCM specialists to provide guidance to the Social Security Administration to update this oversight.  In reality, this endeavor may take years to complete.  For now, here are the ways HCM patients might be approved for disability benefits:
 
(Sections below refer to the Social Security Administration Medical/Professional Relations Blue Book as of October 2008)
 
4.02 Chronic heart failure while on a regimen of prescribed treatment, with symptoms and signs described in 4.00D2. The required level of severity for this impairment is met when the requirements in both A and Bare satisfied.
A. Medically documented presence of one of the following:
1. Systolic failure (see 4.00D1a(i)), with left ventricular end diastolic dimensions greater than 6.0 cm or ejection fraction of 30 percent or less during a period of stability (not during an episode of acute heart failure); or
2. Diastolic failure (see 4.00D1a(ii)), with left ventricular posterior wall plus septal thickness totaling 2.5 cm or greater on imaging, with an enlarged left atrium greater than or equal to 4.5 cm, with normal or elevated ejection fraction during a period of stability (not during an episode of acute heart failure);
AND
B. Resulting in one of the following:
1. Persistent symptoms of heart failure which very seriously limit the ability to independently initiate, sustain, or complete activities of daily living in an individual for whom an MC, preferably one experienced in the care of patients with cardiovascular disease, has concluded that the performance of an exercise test would present a significant risk to the individual; or
2. Three or more separate episodes of acute congestive heart failure within a consecutive 12-month period (see 4.00A3e), with evidence of fluid retention (see 4.00D2b (ii)) from clinical and imaging assessments at the time of the episodes, requiring acute extended physician intervention such as hospitalization or emergency room treatment for 12 hours or more, separated by periods of stabilization (see 4.00D4c); or
3. Inability to perform on an exercise tolerance test at a workload equivalent to 5 METs or less due to:
a. Dyspnea, fatigue, palpitations, or chest discomfort; or
b. Three or more consecutive premature ventricular contractions (ventricular tachycardia), or increasing frequency of ventricular ectopy with at least 6 premature ventricular contractions per minute; or
c. Decrease of 10 mm Hg or more in systolic pressure below the baseline systolic blood pressure or the preceding systolic pressure measured during exercise (see 4.00D4d) due to left ventricular dysfunction, despite an increase in workload; or
d. Signs attributable to inadequate cerebral perfusion, such as ataxic gait or mental confusion.
4.04 Ischemic heart disease, with symptoms due to myocardial ischemia, as described in 4.00E3-4.00E7, while on a regimen of prescribed treatment (see 4.00B3 if there is no regimen of prescribed treatment), with one of the following:
A. Sign-or symptom-limited exercise tolerance test demonstrating at least one of the following manifestations at a workload equivalent to 5 METs or less:
1. Horizontal or downsloping depression, in the absence of digitalis glycoside treatment or hypokalemia, of the ST segment of at least −0.10 millivolts (−1.0 mm) in at least 3 consecutive complexes that are on a level baseline in any lead other than a VR, and depression of at least −0.10 millivolts lasting for at least 1 minute of recovery; or
2. At least 0.1 millivolt (1 mm) ST elevation above resting baseline in non-infarct leads during both exercise and 1 or more minutes of recovery; or
3. Decrease of 10 mm Hg or more in systolic pressure below the baseline blood pressure or the preceding systolic pressure measured during exercise (see 4.00E9e) due to left ventricular dysfunction, despite an increase in workload; or
4. Documented ischemia at an exercise level equivalent to 5 METs or less on appropriate medically acceptable imaging, such as radionuclide perfusion scans or stress echocardiography.
OR
B. Three separate ischemic episodes, each requiring revascularization or not amenable to revascularization (see 4.00E9f), within a consecutive 12-month period (see 4.00A3e).
OR
C. Coronary artery disease, demonstrated by angiography (obtained independent of Social Security disability evaluation) or other appropriate medically acceptable imaging, and in the absence of a timely exercise tolerance test or a timely normal drug-induced stress test, an MC, preferably one experienced in the care of patients with cardiovascular disease, has concluded that performance of exercise tolerance testing would present a significant risk to the individual, with both 1 and 2:
1. Angiographic evidence showing:
a. 50 percent or more narrowing of a nonbypassed left main coronary artery; or
b. 70 percent or more narrowing of another nonbypassed coronary artery; or
c. 50 percent or more narrowing involving a long (greater than 1 cm) segment of a nonbypassed coronary artery; or
d. 50 percent or more narrowing of at least two nonbypassed coronary arteries; or
e. 70 percent or more narrowing of a bypass graft vessel; and
2. Resulting in very serious limitations in the ability to independently initiate, sustain, or complete activities of daily living.
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4.05 Recurrent arrhythmias, not related to reversible causes, such as electrolyte abnormalities or digitalis glycoside or antiarrhythmic drug toxicity, resulting in uncontrolled (see 4.00A3f), recurrent (see 4.00A3c) episodes of cardiac syncope or near syncope (see 4.00F3b), despite prescribed treatment (see 4.00B3 if there is no prescribed treatment), and documented by resting or ambulatory (Holter) electrocardiography, or by other appropriate medically acceptable testing, coincident with the occurrence of syncope or near syncope (see 4.00F3c).
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4.06 Symptomatic congenital heart disease (cyanotic or acyanotic), documented by appropriate medically acceptable imaging (see 4.00A3d) or cardiac catheterization, with one of the following:
A. Cyanosis at rest, and:
1. Hematocrit of 55 percent or greater; or
2. Arterial O2 saturation of less than 90 percent in room air, or resting arterial PO2 of 60 Torr or less.
OR
B. Intermittent right-to-left shunting resulting in cyanosis on exertion (e.g., Eisenmenger's physiology) and with arterial PO2 of 60 Torr or less at a workload equivalent to 5 METs or less.
OR
C. Secondary pulmonary vascular obstructive disease with pulmonary arterial systolic pressure elevated to at least 70 percent of the systemic arterial systolic pressure.
4.05 Recurrent arrhythmias, not related to reversible causes, such as electrolyte abnormalities or digitalis glycoside or antiarrhythmic drug toxicity, resulting in uncontrolled (see 4.00A3f), recurrent (see 4.00A3c) episodes of cardiac syncope or near syncope (see 4.00F3b), despite prescribed treatment (see 4.00B3 if there is no prescribed treatment), and documented by resting or ambulatory (Holter) electrocardiography, or by other appropriate medically acceptable testing, coincident with the occurrence of syncope or near syncope (see 4.00F3c).
 
4.09 Heart transplant. Consider under a disability for 1 year following surgery; thereafter, evaluate residual impairment under the appropriate listing.
 
Medical Tests Needed For Approval
 
The exact tests you need varies depending on which Blue Book listing you qualify under. Some tests that are helpful include, but are certainly not limited to:
 

  • ECG
  • Exercise tests (ETT)
  • Drug-induced stress tests
  • Cardiac catheterization
  • Coronary arteriography
  • Doppler test
  • ECHO
 
Some exceptions can be made if you are too ill to perform a specific test. For example, if you have a systolic gradient (blood pressure) of 50 mm Hg or greater, the SSA will not require that you perform an exercise test to prove your condition is disabling.
Because the entire Blue Book is available online, you can review the listings with your doctor to see where your HCM will qualify. https://www.ssa.gov/disability/professionals/bluebook/4.00-Cardiovascular-Adult.htm#4_09
 
 
Starting Your Application
 
Most people can apply for disability benefits entirely online. If you would prefer, you can also schedule an appointment to apply in person at your closest SSA office. You will never need to physically mail in any medical records[i], but it is important to review the Blue Book with your cardiologist prior to applying to ensure you have enough medical history on your side.  https://www.ssa.gov/disability/
 
Once approved, you can spend your monthly benefits on any daily living needs. This includes rent, childcare, medical costs, medication co-payments, food and leisure, and more. Disability benefits were designed to help your family focus on your health and treatments, not finances.
 
 
This article was written with assistance of the Outreach Team at Disability Benefits Help. They provide information about disability benefits and the application process. To learn more, please visit their website at http://www.disability-benefits-help.org  or by contacting them at help@ssd-help.org.
 
 
[i] https://www.disability-benefits-help.org/blog/medical-records-winning-disability-claim

[i] https://www.disability-benefits-help.org/blog/medical-records-winning-disability-claim