June 26, 2010

HCV Benefits and Disability Issues: Getting Disability Benefits Under Social Security

Social Security offers several types of monthly benefits for a disabled person, Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI) as well as disability benefits for disabled widows, children, and adult children disabled since childhood. While each program has its own requirements for non-medical eligibility, they all use the same definition of total disability and the same method to determine if a person is “disabled enough” to be eligible for disability benefits.

Under Social Security a person is considered disabled if: (1) Due to a medical condition he/she is unable to perform the tasks of a job for which he/she is suited, AND (2) That condition either has or will last for at least twelve months or is expected to result in death.

Well over 50% of the initial applications for disability benefits are denied, not because the disability definition is that difficult to meet, but primarily because the applicant didn’t understand the disability determination process and didn’t give Social Security the information they needed to award benefits.

The problem of being denied Social Security benefits appears to affect people with HCV even more, for several additional reasons:

• To Social Security, HCV is a relatively new disabling condition and they really haven’t developed an organized approach to reviewing HCV claims;

• The symptoms of HCV can vary from none at all to completely debilitating, so the diagnosis of HCV alone doesn’t have much impact in determining disability; and,

• Many of the most common symptoms of HCV are “subjective” in that they can’t be readily measured in a laboratory test. Examples are fatigue, headaches, memory loss, and depression. Therefore, medical records alone often don’t adequately describe the functional problems the applicant has trying to work.

A person dealing with HCV rarely suddenly awakens one day to find himself or herself unable to continue working. Typically, it’s a gradually deteriorating ability to work. Work becomes more and more difficult; finding the energy to work is more and more time-consuming. Some reach the point where they only work and spend the remainder of their time in bed trying to regain enough strength to return to work.

If you believe that the time to apply for Social Security Disability is approaching, especially in the next few months there are two things you can do before stopping work and applying that can greatly increase your chances of getting your claim approved the first time around: (1) Learn how Social Security processes a claim for disability; and, (2) Assemble and review the “medicalevidence” which they will use to determine if you are  disabled by their definition.

Learn How Social Security Processes a Claim for Disability
Social Security has put a lot of information about the disability process on their website at http://www.ssa.gov/.

For example, in examining a disability claim there are five questions that a Disability Analyst seeks the answers to:
1. Are you working?
2. Is there a medical problem that affects your ability to work to any degree?
3. Is your condition found in the Listing of Impairments? (more on that below)
4. Can you do the work you did previously?
5. Can you do any other type of work?
To be eligible for benefits, the answer to #1 must be “No,” and the answer to #2 must be “Yes.”

If the answer to #3 is “Yes,” your claim will be approved. If not, then both #4 and #5 must be “No.”

To facilitate the process and to maintain some uniformity throughout the country, Social Security publishes a book called, Disability Evaluation Under Social Security, or “The Blue Book” which includes a Listing of Impairments. If your medical condition is listed in that Listing of Impairments, and it meets the criteria given, then your claim is routinely approved.

The Listing, unfortunately, does not directly deal with Hepatitis C, although there is a listing for Chronic Liver Disease that includes chronic active hepatitis. However, because the symptoms can vary substantially, they also include some guidelines on how severe the condition must be:

“5.05 Chronic liver disease (e.g., portal, postnecrotic, or biliary cirrhosis; chronic active hepatitis; Wilson’s disease). With:

A. Hemorrhaging from esophageal, gastric, or ectopic varices or from portal hypertensive gastropathy, demonstrated by endoscopy, x-ray, or other appropriate medically acceptable imaging, resulting in hemodynamic instability as defined in 5.00D5, and requiring hospitalization for transfusion of at least 2 units of blood. Consider under disability for 1 year following the last documented transfusion; thereafter, evaluate the residual impairment(s).


B. Ascites or hydrothorax not attributable to other causes, despite continuing treatment as prescribed, present on at least 2 evaluations at least 60 days apart within a consecutive 6-month period. Each evaluation must be documented by:
1. Paracentesis or thoracentesis; or
2. Appropriate medically acceptable imaging or physical examination and one of the following:
    a. Serum albumin of 3.0 g/dL or less; or
    b. International Normalized Ratio (INR) of at least 1.5.


C. Spontaneous bacterial peritonitis with peritoneal fluid containing an absolute neutrophil count of at least 250 cells/mm3.


D. Hepatorenal syndrome as described in 5.00D8, with on of the following:
1. Serum creatinine elevation of at least 2 mg/dL; or
2. Oliguria with 24-hour urine output less than 500 mL; or
3. Sodium retention with urine sodium less than 10 mEq per liter.


E. Hepatopulmonary syndrome as described in 5.00D9, with:
1. Arterial oxygenation (PaO2) on room air of:
    a. 60 mm Hg or less, at test sites less than 3000 feet above sea level, or
    b. 55 mm Hg or less, at test sites from 3000 to 6000 feet, or
    c. 50 mm Hg or less, at test sites above 6000 feet;

2. Documentation of intrapulmonary arteriovenous shunting by contrast-enhanced echocardiography or macroaggregated albumin lung perfusion scan.


F. Hepatic encephalopathy as described in 5.00D10, with 1 and either 2 or 3:
1. Documentation of abnormal behavior, cognitive dysfunction, changes in mental status, or altered     state of  consciousness (for example, confusion, delirium, stupor, or coma), present on at least two evaluations at least 60 days apart within a consecutive 6-month period; and
2. History of transjugular intrahepatic portosystemic shunt (TIPS) or any surgical portosystemic shunt; or
3. One of the following occurring on at least two evaluations at least 60 days apart within the same consecutive 6-month period as in F1:
    a. Asterixis or other fluctuating physical neurological abnormalities; or 
    b. Electroencephalogram (EEG) demonstrating triphasic slow wave activity; or
    c. Serum albumin of 3.0 g/dL or less; or
    d. International Normalized Ratio (INR) of 1.5 or greater.


G. End stage liver disease with SSA CLD scores of 22 or greater calculated as described in 5.00D11. Consider under a disability from at least the date of the first score.

If your medical condition meets one of these criteria, your claim should be approved. However, it will help if your physician states the condition in a letter to Social Security, using terms and results as shown in the Listing.

If your condition does not meet any of these criteria, all is not lost. It is still possible to have your claim approved if the symptoms you exhibit are as severe as one of the listings. If your symptoms clearly show that the answers to questions #4 & 5 are both no, your claim will also be approved.

Usually, however, more medical evidence will be required to get the claim accepted. In that case, you should make sure you submit all the medical evidence that you can with the application.

Assemble and Review Your Medical Evidence
The most important evidence in determining disability is the records of your medical providers. This could be more than the records of your primary care physician and specialist. It may also include the records of your therapist, chiropractor, acupuncturist and other medical practitioner. “Non-medical establishment” providers won’t carry the weight of “regular” doctors, but they can support your claim by documenting your symptoms and your efforts to relieve them.

Disability determination focuses on your symptoms and how they prevent you from working so it is a good idea to make sure your physicians enter your symptoms into the record with each visit, even if it is repetitive.

To greatly speed up processing time, it is also recommended that you take copies of your medical records when you go to your initial interview with Social Security. While the medical records of your providers are the primary source of evidence in reviewing your claim, there are other documents and records that can help your claim as well. These include:

1. Questionnaires – Once you apply for disability benefits, the Disability Analyst will send you questionnaires to get specific information. They may be about Pain, Fatigue, your daily activities, or other conditions or symptoms. These questionnaires are your opportunity to transform the medical data from your physicians into actual descriptions of the problems your condition cause you when working and in your daily routine. You should not skimp on these or rush through them quickly. Take your time, add extra sheets of paper, well-labeled, and thoroughly describe in detail exactly how your symptoms affect your routine.

2. Letters from Physicians – Ask each of your doctors to write a thorough summary of your condition. They should focus on relating the medical conditions and test results to the symptoms you are experiencing. To adequately do the job, each letter should be several pages long, not just a couple of paragraphs

3. Third Party Testimony – These are letters from friends, family, or co-workers that describe their observations of your problems trying to function. These should be anecdotes and descriptions of what they have observed in your performance. One of the best is a copy of a “write-up” by your supervisor on your deteriorating performance from your personnel file. Not everyone will have one of these as many people work that much harder to make sure their performance doesn’t deteriorate. Letters from a spouse, house mate, and co-workers on how your activities and abilities have changed due to your condition are good also. A description through anecdotes of how your ability to function has deteriorated should be their goal. While these alone won’t get your claim approved, they do help provide a good picture of how your medical condition affects your activities.

4. Symptom Diary – This can be an especially helpful tool when the symptoms are primarily subjective. Psychologically it is not fun to do, but it can help confirm the impact of the symptoms on your activities. A symptom diary is simply a daily log, in which you enter the symptoms you experienced during the day, their severity including how long they lasted, and their impact on your daily activities such as requiring you to rest, cancel planned appointments, etc.

This seems like a lot of work just to get benefits that you deserve, but, remember, Social Security is so big that they can’t be bothered with “what’s fair” or “what you deserve.” You need to know their rules and “play the game” by them. Making the effort with the initial application can avoid having to drag through a year or more of appeals and sharing your award with an attorney, which will save you time, money, and lots of stress.

Jacques Chambers, CLU, and his company, Chambers Benefits Consulting, have over 35 years of experience in health, life and disability insurance and Social Security disability benefits. For the past twelve years, he has been assisting people with their rights, problems, and other issues concerning benefits and disability. He can be reached at jacques@helpwithbenefits.com or through his website at: http://www.helpwithbenefits.com/.


NVHR Capitol Hill Rally: The World Hepatitis Day

Silent No More! Hundreds of advocates join forces in DC to demand policy change for more than 5 million Americans living with viral hepatitis. The rally was hosted by the National Viral Hepatitis Roundtable. http://www.nvhr.org/

June 25, 2010

Blood-boosting Adjuvant Therapies Can Improve Response to Interferon-based Treatment for Hepatitis C

SUMMARY: Use of adjuvant medications such as hormones that stimulate red and white blood cell production allowed chronic hepatitis C patients receiving pegylated interferon plus ribavirin to stay on treatment longer and increased their likelihood of achieving sustained virological response, according to a study published in the April 1, 2010 Journal of Viral Hepatitis.

By Liz Highleyman

Standard therapy for chronic hepatitis C virus (HCV) infection, consisting of pegylated interferon alfa-2a (Pegasys) or pegylated interferon alfa-2b (PegIntron) in combination with ribavirin for 24 or 48 weeks (depending on HCV genotype) leads to an overall sustained virological response (SVR) rate of approximately 50%.

Part of the reason for this suboptimal efficacy is that the treatment can cause difficult side effects that cause many people to reduce their drug doses or stop treatment prematurely. But several supportive, or adjuvant, therapies can help patients stay on treatment. These include:

  • Antidepressants to manage the common side effect of depression (which may be started in advance for prevention);
  • Erythropoietin (Procrit, Epogen) to increase production of red blood cells and manage anemia (a side effect of ribavirin);
  • Granulocyte colony-stimulating factor (Neupogen, Neulasta) to increase production of neutrophils, a type of white blood cell that fights infection.
W.J. Cash and colleagues from Royal Victoria Hospital in Belfast designed a study to assess the clinical impact and effect on sustained response of blood-boosting adjuvant therapies used during treatment with pegylated interferon plus ribavirin.

The analysis included 132 chronic hepatitis C patients (73% men). All but 11 participants were treatment-naive, of whom about 40% had hard-to-treat HCV genotypes 1, 4, or 6. The endpoint of interest was SVR, or continued undetectable HCV viral load 24 weeks after completion of treatment.

  • 57 patients (43.8%) used adjuvant therapies.
  • The overall sustained response rate was 66.7%, but varied according to HCV genotype:
           *Genotypes 1, 4, or 6: SVR 50.0%;
           *Genotypes 2 or 3: SVR 78.2%.
  • Among all treatment-naive participants, the SVR rate was 68.6%, again varying by genotype:
          *Genotype 1 (n = 51): 49.0%;
          *Genotypes 2 or 3 (n = 70): 82.9%.

Based on these findings, the researchers concluded, "With the use of supportive adjuvant therapy, we achieved an overall SVR of 66.7% and in treatment-naive patients 68.6%."

"In genotype 1 patients, SVR rates of up to 46% have been reported in previous studies without the use of erythropoietin and granulocyte colony-stimulating factor," they continued. "We have demonstrated the SVR for genotype 1 can be improved to 50% overall."

Investigator affiliations: Liver Unit, Royal Victoria Hospital, Belfast, UK.



WJ Cash, K Patterson, ME Callender, and NI McDougall. Adjuvant therapy used in conjunction with combination therapy for chronic hepatitis C improves sustained virus response rates in genotype 1 patients. Journal of Viral Hepatitis 17(4): 269-273 (Abstract). April 1, 2010.


House of Representatives Holds Hearing on the "Secret Epidemic" of Viral Hepatitis

SUMMARY: One June 17 the U.S. House of Representative Oversight and Government Reform Committee held a hearing on viral hepatitis, a largely "silent epidemic" that has begun to receive more attention in the wake of the Institute of Medicine's report on liver cancer and hepatitis B and C. Assistant Secretary for Health Howard Koh and John Ward, director of the Centers for Disease Control and Prevention's Viral Hepatitis Program, participated in the meeting. The committee urged Congress to pass legislation introduced by Rep. Mike Honda and a bipartisan coalition of co-sponsors (H.R. 3974) that will increase funding for hepatitis B and C education, testing, and treatment.

Below is the text of a posting from the American Associations for the Study of Liver Diseases (AASLD) public policy web site describing the meeting.

Viral Hepatitis: The Secret Epidemic

Hearing by the Committee on Oversight and Government Reform, United States House of Representatives, June 17, 2010
In response to the Institute of Medicine (IOM) report last January -- Hepatitis and Liver Cancer: A National Strategy for Prevention and Control of Hepatitis B and C -- and AASLD's collaboration with the Trust for America's Health to bring attention to the burden of liver disease created by viral hepatitis, the House Oversight and Government Reform Committee held a hearing on Thursday, June 17th entitled Viral Hepatitis: The Secret Epidemic. During the hearing, the Committee urged Congress to pass legislation to boost the diagnosis and treatment of viral hepatitis. Witnesses included Representatives Hank Johnson, Bill Cassidy and Mike Honda as well as Dr. Howard Koh, Assistant Secretary for Health at the Department of Health and Human Services, Mr. Randy Mayer, Chief of the Bureau of HIV, STD and Hepatitis at the Iowa Department of Public Health, Mr. Michael Ninburg, Executive Director of the Hepatitis Education Project, Dr. Jeffrey Levi, TFAH, and Mr. Rolf Benirschke, Spokesperson for Hepatitis C Awareness.

Representative Cassidy did an excellent job articulating the impact of viral hepatitis should it go unchecked. He raised the point that it costs $50 to vaccinate a child against HBV, but costs over $1 million to treat a HBV patient over their lifetime should they receive a liver transplant. He cited the effectiveness of the vaccines for children program authorized by Congress during the Clinton administration and urged Congress to act again to fight viral hepatitis. He stressed that the most important thing that can be done is to educate providers, patients, and their families. In his testimony, Representative Honda advocated for the support and passage of his bill, HR 3974.

Assistant Secretary Koh -- accompanied by Dr. John Ward -- said that the interagency report would be completed this fall. He cited the need for more research for a HCV vaccine, to improve awareness of infection, reduce the spread of hepatitis in health care settings, and raise awareness within and testing of high risk populations. When asked by Chairman Towns (D-NY) whether hepatitis could be eliminated, Koh responded that it could be with the right resources. Koh also touched on screening guidelines and cited the US Preventive Services Taskforce (USPSTF) as just one of the groups that releases screening guidelines. Representative Bilbray (R-CA) asked about the target population for screening, saying he believes that the population should be viewed multi-dimensionally. Koh and Ward responded that risk based screening models have created barriers to screening and given the segment of the population most likely to be developing symptoms, an age based strategy could be more effective.

While both Democrats and Republicans on the committee agreed that something must be done to prevent the spread of viral hepatitis, the main obstacle remains funding for the needed programs.



AASLD. Viral Hepatitis: The Secret Epidemic. Public Policy web site (undated).

M Honda. It's Time to Get Serious About Viral Hepatitis. Roll Call. June 22, 2010