How receptive are Social Security disability judges to rare diseases like Polycythemia Vera?
If you have been diagnosed with PV you certainly know what it is, but for those not familiar with this disease, it is a blood disease in which the body makes too many blood cells. The excessive numbers of red blood cells make the blood thick, meaning that PV patients are at greater risk for heart attacks, strokes, and blood clots. In some cases, the excessive blood cells are not fully formed, meaning that the body does not get sufficient oxygen or iron. PV may be treated with medications and it is often treated with phlebotomy (draining blood from the system).
Currently there is no listing for Polycythemia Vera although the listings do refer to this condition in listing 7:
These listings are only common examples of hematological disorders that we consider severe enough to prevent a person from doing any gainful activity. If your disorder does not meet the criteria of any of these listings, we must consider whether you have a disorder that satisfies the criteria of a listing in another body system. For example, we will evaluate hemophilic joint deformity or bone or joint pain from myelofibrosis under 1.00; polycythemia vera under 3.00, 4.00, or 11.00….
- Listing 3 refers to respiratory ailments
- Listing 4 refers to cardiovascular diseases
- Listing 11 refers to neurological diseases
So, when I am representing a client with PV, I will identify the complication(s) which create the biggest impediments to work activities and argue that my client’s condition equals a particular listing. This listing equivalence argument tends to work best when SSA has specifically offered guidance about equivalence as it has done here.
Along with arguing for a fully favorable award based on the listing I will also make a functional capacity argument. Here I will focus on the specific work activity limitations arising from PV – problems such as extreme fatigue, pain, sensitivity to cold, etc. that, when taken as a whole, would prevent an affected individual from performing the duties of even a simple, entry-level job.
Because PV is relatively rare condition, judges may not be familiar with all of the issues that can arise and when presenting these cases I often supply the judge with background medical information.