As I write this, I am returning from a trip to Boston where I had the opportunity yesterday to participate in a hearing hosted by the Social Security Administration.
The topic was “Compassionate Allowance Outreach,” and the issue was how to hasten Social Security disability benefits to patients diagnosed with cancer.
Disability is something that many of us don’t like to think about. In particular, Social Security disability usually means that you are completely disabled and that the disability is long term, as noted in a Social Security booklet entitled “Disability Benefits.”
The problem for certain cancer patients is that the benefits they have earned and deserve may not show up until it is too late to be of help.
When I started my oncology practice in Baltimore over 30 years ago, I quickly learned as a young physician caring for very sick patients about the problems with Social Security Disability.
The forms were long, the paperwork significant, and the time it took to get a benefit determination seemed interminable for my patients. Medicare didn’t become effective for two years after a patient was declared disabled, which was long after they needed help paying their medical bills.
The delays—particularly for Medicare—didn’t make sense to me then, and they don’t make sense to me now.
The landscape may be changing, however, since the current Social Security Administration Commissioner—Michael Astrue—has taken a very direct and personal interest in this issue.
The result is a series of hearings nationwide to hear testimony regarding the impact of these delays on those who find themselves disabled. One of those hearings was held yesterday in Boston.
The Social Security disability booklet points out that if you are a 20 year old worker, you have a 3 out of 10 chance that you will become disabled before you retire. For Social Security to become effective, you have to have a disability that is expected to last at least one year, or result in death.
There are some specific requirements that must be met to get Social Security disability:
1) You cannot earn more than a minimal amount of money as a result of your illness, which is defined by the Social Security Administration each year.
2) Your medical condition must be severe, which means you have significant limitations on basic work related activities, such as walking, sitting and remembering for at least one year.
3) Your condition is pre-defined as being associated with severe disability, or
4) A state agency must decide if your condition prevents you from being able to do the work you did before. If you can do that work, then you are not disabled according to the booklet. If you can’t do your prior occupations, then…
5) Could you do other work? If you cannot, then you are disabled.
The issue we addressed yesterday was specifically about what can be done to accelerate benefits for patients with cancer, especially those who have poor prognoses or are facing intensive, prolonged treatments.
As noted in our testimony, once someone hears that they have cancer they frequently have their lives completely upended. What were routine expenses can quickly become insurmountable. At a time of great need, another burden results from having to deal with the financial impact of a serious and life-threatening illness.
As we told Mr. Astrue and his colleagues, it is the opinion of the American Cancer Society that the delays in getting supplemental Social Security income benefits to patients in need are a serious matter, especially when one considers our concerns regarding to access to care. We noted many cancer patients face intensive treatment, and have to simultaneously cope with the fact that they are suddenly disabled, watching their income and savings disappear while they desperately do what they can to save their lives.
What you may not know is that there is a five month waiting period to get Social Security disability income (SSDI). But this is a best case scenario, since the SSA gets millions of disability claims every year, and a backlog is inevitable giving staffing and data limitations (much of the medical information they have to go through, for example, is paper based, not electronic).
Another barrier is that once you are declared disabled, you become eligible for Medicare benefits—but Medicare won’t start until you go through a two year waiting period.
These delays are far too long for many patients under retirement age who develop cancer.
The solution, however, is not simple. Many of these requirements have been enacted in the past through Congressional legislation.
As a result, changing the law on waiting periods would require Congress to act. You had better believe that someone is going to raise the question of how we could pay for reducing or eliminating the waiting periods, especially for cancer patients who have extremely poor prognoses. It would not be an inexpensive proposal, especially given the well known concerns about the lack of financial stability for the Social Security and Medicare programs.
The good news is that Mr. Astrue and his staff are working to do something about this. That is why these hearings are being held across the country, and why they have put programs in place to reduce the backlogs and improve the initial disability review process.
As we testified yesterday, the American Cancer Society will do what it can to assist in this effort. The Society is also committed to reducing the two year waiting period for Medicare eligibility for cancer patients in need.
As I mentioned during my comments yesterday, we have to understand the interface where science meets public policy. It is not always a pretty sight.
Our science is becoming more refined, but our legislative and regulatory policies--in the words of one of the participants yesterday--are “rough cut.” It is not an easy task to bring the two together effectively and in a timely manner.
We did suggest that for certain diagnoses, where the outlook is particularly poor, that the disability process be accelerated and benefits hastened. We could accomplish this goal through legislative and regulatory efforts, and by using expert panels to determine which diagnoses, stages of disease and treatments could qualify for these accelerated benefits.
I concluded our testimony yesterday with the following comments:
“If we applied a rule of reason, I doubt there are any of us who could object to making certain that hard working people and their families, in their moment of greatest need, should have access to benefits they have worked for, paid for, and deserve. Faced with the diagnosis of a near term fatal illness, frequently anticipating debilitating and expensive medical care, or perhaps requiring end-of-life care, we could at least offer them some comfort in knowing that we cared enough to provide some of the help that they desperately need and deserve. And spare them the fear of significant debt.”
As the American Cancer Society moves forward with our Access to Care campaign, we cannot forget that there are many facets to the problem.
Having access to affordable medical care is one of those facets. Being able to survive financially once you are diagnosed is another.
Speeding up the process to get Social Security disability income and Medicare benefits is not a total solution, but for many in need it certainly would be a welcome step forward.
These are not gifts or handouts. These are benefits all of us pay for every time we get a paycheck.
Maybe the time is right to address the issue. After all, thirty years has been a long time to wait.
If you are interested, here is the text of our statement:
Commissioner Asture, fellow panel members and guests:
I am honored to speak with you today on behalf of the American Cancer Society, the nation’s largest voluntary non-profit health organization, and our millions of dedicated volunteers in communities across the country. As you know, the Society is committed to reducing the suffering and burden of cancer, so we applaud your willingness to have this hearing to discuss approaches to streamlining the disability process for those most in need.
We have been fortunate over the past 25 years to substantially reduce the risk of death from cancer through advances in prevention, early detection and treatment. There are now almost 11 million cancer survivors in the United States and countless lives have been improved by our nation’s efforts to treat this deadly disease.
Despite our progress, unfortunately, there are still many who are diagnosed too late for effective treatment, or who have a form of cancer that is not responsive to many of the treatments we currently have available. For those individuals and their families, the words “you have cancer” carry an even greater burden.
For these people, the burden extends beyond the diagnosis and treatment of their cancer. There are serious financial concerns for many people faced with a diagnosis of cancer, including access to care, the costs of treatment, and the inevitable financial difficulties associated with daily living, including the loss of employment income. For many, what may have been routine expenses prior to their diagnoses suddenly and quickly can become almost insurmountable.
The American Cancer Society has made access to health care a top priority. We recognize that without access, our efforts to promote prevention, early detection and treatment can become meaningless if people can’t afford to get the care they need. The problem is obviously a serious one for the nation’s 47 million uninsured. But it is also a problem for millions of people who have health coverage but discover too late that it is inadequate—the cost of full treatment for their cancer is beyond their means because of high deductibles and co-pays, limits on benefits, or the lack of coverage of necessary services.
In 2001, an estimated 2 million Americans experienced bankruptcy caused by illness and medical bills. Approximately ten percent of these cases were caused by cancer-related costs. Cancer was the highest cost diagnosis with average out-of-pocket medical costs of $35,878 compared to the next highest cost diagnosis, neurologic diseases, at $15,560. We know that 25% of cancer patients used up all or most of their savings during the course of their treatments. One in five of these individuals had health insurance. For many people, cancer presents an ever-increasing mountain of bills for themselves and their families.
We can only imagine the distress that many patients and their families experience when they discover that there is no safety net to catch them financially once they are diagnosed with cancer. Facing intensive treatment to save their lives, they may also have to cope with the fact that they are truly disabled and unable to perform their daily work-related activities. Their jobs disappear, their income and savings disappear, and for many, their short term outlook is dismal.
For some of these individuals and their families, we have the opportunity to address and correct what has become a burdensome and cumbersome system—the Social Security Disability Insurance program (SSDI). This program, if better structured, could provide a vital level of financial support in a time of great need.
Our purpose here today is to address how we might streamline and improve the process by which Social Security disability benefits are determined and initiated. We would also like to put on the table for discussion the question of the two year waiting period for Medicare for those who become disabled prior to their 65th birthday.
Many in this room today are all too familiar with the laws and rules and regulations surrounding Social Security Disability Income and Medicare programs for the disabled.
The five month waiting period for SSDI (which is in reality frequently substantially longer than that because of administrative backlogs) and the two year waiting period for Medicare benefits for those who are disabled are legendary to those of us in the cancer community who see first hand the devastating impact of these requirements.
The American Cancer Society is committed to eliminating the two-year waiting period for cancer patients to obtain Medicare coverage and eliminating other administrative hurdles that prevent timely and essential medical and financial support. Currently, individuals under age 65 with disabilities, including late stage cancers, can technically obtain Medicare coverage based on their disability. However, the two-year waiting period makes it extremely difficult for a cancer patient to obtain coverage. The two-year waiting period is particularly detrimental to those individuals with late stage cancer or more deadly cancers like pancreatic cancer where the probability of surviving two years is very low.
Aggravating the coverage delay is the fact that before an individual with late stage cancer can acquire SSDI or Medicare coverage, he or she must first receive a disability determination from the Social Security Administration (SSA), which can take months. Only then, after the determination from the SSA, does the two year wait to obtain Medicare coverage begin.
As I mentioned previously, the unfortunate reality is that for many patients diagnosed with cancer, their outlook is grim. The waiting periods are especially onerous for these patients under the age of 65 who present with certain cancer diagnoses and/or advanced disease, those for which the probability of survival is known to be low. These patients not infrequently go through their diagnoses and treatments without ever having been able to receive a final disability determination. Even within my own family, there have been circumstances where the time from diagnosis to death was measured in months, too short a period to get either disability coverage or Medicare benefits.
We do believe there are certain criteria which could be applied that would help accelerate the disability determination process and thereby provide a more reasonable approach to getting benefits to beneficiaries in need in a more expeditious manner.
When you review the data from the Surveillance Epidemiology and End Results database of the National Cancer Institute (commonly known as SEER), you can quickly find diagnoses that are associated with particularly onerous prognoses, where a majority or close to a majority of the patients diagnosed with particular cancers have a survival of less than one year. Examples include lung cancer, the most common cause of death from cancer for both men and women in the United States in 2008, where the majority of patients present with advanced disease. For patients under the age of 65 diagnosed with lung cancer, the one year survival is under 50%, or 46.9%.
For patients with acute myeloid leukemia under the age of 65, the one year survival is 52.7% for men and 59.3% for women.
For patients with localized esophageal cancer, the one year survival ranges from 38.7% for black men to 51.5% for white women.
Pancreatic cancer is particularly deadly. In 92% of patients, it is a disease that is usually diagnosed beyond the moment when it can be successfully resected. For all patients under age 64, the one year survival ranges from 21.7% for black men to 32.4% for white women.
I believe the point is clear: there is much more we can do to make certain that, at a time of the greatest need that any of us can imagine, we do not increase the burden of suffering for those with cancer and their families by continuing to impose inordinate approval and waiting periods to get benefits to those who all of us agree need them most.
We propose that Congress and the Social Security Administration work legislatively and through regulation to establish a process which, under certain defined circumstances, would eliminate the waiting periods to receive SSDI and Medicare benefits for patients with certain cancer diagnoses. These patients would meet redefined and more appropriate disability criteria which reflect their medical need and expected survival.
We could base these criteria on survival probabilities as determined by diagnosis, stage at presentation, and treatments. The criteria could be established through an expert panel and public comment, and could serve at least as an initial “filter” to be certain that those in most need are moved to the head of the line for disability determination.
If we applied a rule of reason, I doubt there are any of us who could object to making certain that hard working people and their families, in their moment of greatest need, should have access to benefits they have worked for, paid for, and deserve. Faced with the diagnosis of a near term fatal illness, frequently anticipating debilitating and expensive medical care, or perhaps requiring end-of-life care, we could at least offer them some comfort in knowing that we cared enough to provide some of the help that they desperately need and deserve. And spare them the fear of significant debt.
Again, we appreciate having the opportunity to appear before you today and look forward to answering your questions. We look forward to working with you, Congress and the Administration to provide whatever help we can to address a need that is so obvious but has been ignored for so long.
Your willingness to provide a forum and focus for this topic is much appreciated.