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SSA Announces New Ruling for Interstitial Cystitis

An Indepth Analysis of SSR 02-2p

IC patients around the USA were delighted to hear that the Social Security Administration has issued a new "Policy Interpretation Ruling" for Interstitial Cystitis (SSR 02-2p), effective November 5, 2002. This should ease the way for patients who are applying for federal disability benefits. Let's take a closer look at the SSA, this specific ruling and how it relates to IC patients.

What's the difference between SSA & SSI?
In August 1935, President Franklin D. Roosevelt signed the Social Security Act to create a social insurance program designed to pay retired workers age 65 or older a continuing income after retirement. To qualify for benefits, a worker must "pay" into the SSA system a modest amount with each paycheck, which then makes them eligible to receive benefits at the time of retirement. In the 1950's, the SS Act was amended to provide benefits to disabled workers who were no longer able to work. It's important to know that Social Security benefits were never intended to be the only source of income when you retire or become disabled, or your family's only income if you die. It is intended to supplement other income you have from pension plans, savings, investments, etc.

The Social Security Administration also administers the Supplemental Security Income (SSI) Program. Rather than being paid by the Social Security trust fund, the SSI makes monthly payments to people who have a low income and few assets. To get SSI, you must be 65 or older or be disabled. Generally, people who get SSI also qualify for Medicaid, food stamps and other assistance. SSI benefits are not paid from Social Security trust funds and are not based on past earnings. Instead, SSI benefits are financed by general tax revenues and assure a minimum monthly income for elderly and disabled persons.

Both SSA and SSI can provide benefits for the disabled. If you have worked for roughly ten years (or less if you are younger), you are likely entitled to apply for SSA benefits. If you do not have a work history and are low income, you can apply for SSI benefits.

Interstitial Cystitis
Some IC patients have qualified to receive either SSA or SSI benefits in cases where they are very seriously ill. Others, however, have struggled to be approved for benefits, in part because SSA has not included IC on their formal list of disabilities. Social Security Ruling SSR 02-2p "Evaluation of Interstitial Cystitis" will dramatically help IC patients during the review process because it clearly states that interstitial cystitis can be a disability and provides guidelines for SSA staff in reviewing IC related applications. This became effective on November 5, 2002.

In reviewing the ruling, I'm very impressed with their description of IC diagnosis, symptoms and therapies. This will serve patients well because it provides a solid education for SSA personnel. For example, they describe IC as "a complex, chronic bladder disorder characterized by urinary frequency, urinary urgency, and pelvic pain. IC occurs most frequently in women (about 10 times more often than in men), and sometimes prior to age 18."

It firmly demonstrates the role of related conditions and how they can contribute to an overall disability. "IC may be associated with other disorders, such as fibromyalgia, chronic fatigue syndrome, allergies, irritable bowel syndrome, inflammatory bowel disease, endometriosis, and vulvodynia (vulvar/vaginal pain). IC also may be associated with systemic lupus erythematosus."

The ruling also describes the individual nature of IC and the pain that some patients struggle with.

"Symptoms of IC vary both in kind and in intensity from individual to individual, and even in the same individual. The three most common symptoms are an urgent need to urinate (urgency), a frequent need to urinate (frequency), and pain in the bladder and surrounding pelvic region. These symptoms may occur either singly or in combination. The pain may range from mild discomfort to extreme distress. The intensity of the pain may increase as the bladder fills, and decrease as it empties. In addition, many patients experience vaginal, testicular or penile pain, or low back and thigh pain."

Given the current controversies regarding the diagnosis of IC (and the diminishing role of hydrodistention), the ruling provides the following criteria for a diagnosis of IC. Please note that it says "some" or "all" of these symptoms, reflecting yet again that IC is so very individual.

A diagnosis of IC is based on the presence of some or all of the following:

• Presence of urinary urgency or frequency (day and/or night), either singly or in combination;
  
• Pain in the bladder and surrounding pelvic region;
  
• Suprapubic tenderness on physical examination;
  
• Glomerulations (pinpoint bleeding caused by recurrent irritation) on the bladder wall after hydrodistention on cystoscopy;
  
• Hunner's ulcers on the bladder wall after hydrodistention on cystoscopy; and,
  
• Absence of other disorders that could cause the symptoms.
  

One controversial question in the IC community can be put to rest, perhaps forever. Should a patient, without Hunner's Ulcers or glomerulations, be diagnosed with IC? We've certainly known that some patients will have a "normal" looking bladder during hydrodistention yet still experience symptoms. This was acknowledged by those who developed the NIDDK criteria for IC. It is comforting to see that SSA will NOT exclude these patients either. The ruling says "an absence of glomerulations or Hunner's Ulcers on cystoscopy does not exclude a diagnosis of IC: a minority of individuals (10%) with IC will not have either of these medical signs."

As much as we'd like to be able to walk in and say that we have "IC," SSA will not approve benefits based upon a statement of symptoms. You cannot just say that you have IC and expect to be approved. You must also have medical evidence (symptoms, signs and/or laboratory evidence) supporting your claim.

The SSA Sequential Evaluation Process
SSA staff will conduct a three stage review of your application:

1. Is your impairment severe?
2. Does your impairment meet or equal the requirements of a listed impairment?
3. Does IC prevent you from doing regular and consistent work?

Obviously, #1 is based upon an examination of your medical history. #2 compares IC to other diseases that have been certified as disabling by the SSA. The ruling is perhaps the most helpful in #3 because it covers the many ways that IC can disrupt our lives and work schedules:

"IC can cause a limitation of function. The functions likely to be limited depend on many factors, including urinary frequency and pain. An individual may have limitations in… sitting, standing, walking, lifting, carrying, pushing and pulling…The effects of IC may not be obvious. For example, many people with IC have chronic pelvic pain, which can affect their ability to focus and sustain attention on the task at hand. Nocturia (nighttime urinary frequency) may disrupt sleeping patterns…. The presence of urinary frequency alone can necessitate trips to the bathroom as often as every ten minutes, day and night. Consequently, some individuals with IC may confine themselves to their homes."

Conclusion
While it would have been most helpful if SSA had classified IC as one of their listed impairments, this ruling is certainly beneficial. It will provide sound, factual information for SSA personnel to better understand IC and why patients may apply for disability. We can't promise 100% approvals, but let's hope that it speeds up the process and reduces the rate of first time denials. Congratulations to all who have written the SSA, their Senators and Congressmen asking for compassion for IC patients. Your words were heard. It took many years to accomplish this change thanks, in great part, to the efforts of the ICA-US as well.

Additional Reading & References:
Text of SSA Ruling
ICA Press Release: Nov. 5th, 2002
Understanding Social Security
A Brief History of Social Security