NORD Patient Assistance Program

The National Organization of Rare Disorders runs a Patient Assistance program for those with Cushing’s or suspected Cushing’s. See the NORD website, call 1-800-999-6673 x 326 or email: [email protected]

For other resources that offer free or low-cost programs and services that are organized by U.S. State, please visit NORD’s State Resource Center. See the NORD website, call 1-800-469-0283 or email: [email protected]

Cushing’s Syndrome and Social Security Disability Benefits

Cushing’s syndrome challenges the human body in a variety of ways, making even day-to-day activities difficult to complete. For this reason, individuals with Cushing’s syndrome may need financial assistance to offset the expenses associated with lost income and medical treatment. If you have Cushing’s syndrome and can no longer work, you may be eligible to receive Social Security Disability benefits.

Continue reading for information about qualifying for disability benefits in the United States.

Benefit Programs and Defining Disability

For an individual to qualify for disability benefits with Cushing’s syndrome, he or she must meet the Social Security Administration’s (SSA) definition of adult disability. This definition is made up of the following requirements:

• The adult is unable to engage in Substantial Gainful Activity (SGA). The SSA considers SGA to be earning $1,040 or more a month; and
• The adult cannot do the work they did prior to becoming disabled nor can the adult be retrained to do a different type of work; and
• The adult must have a diagnosed physical or mental health condition that has lasted or is expected to last at least one year or result in death.

Individuals who meet these requirements may be eligible to receive disability benefits from one, or both, of the federal benefit programs run by the SSA. These programs are Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Each has different technical eligibility requirements.

SSDI – SSDI is offered to disabled workers and their eligible dependents. To qualify for SSDI you must have worked for a specific amount of time and you must have paid a specific amount of Social Security taxes in the past. It is important to note that SSDI benefits are paid only to individuals with long term disabilities. For this reason, the SSA has a 5 month waiting period in place. Essentially, this means that a person will not be eligible to receive SSDI until five months after becoming disabled. To learn more about qualifying for SSDI, visit this page. 

SSI – Unlike SSDI, SSI does not require employment history because this program is not funded through Social Security taxes. SSI is a need-based program and is funded through general tax revenues. There are two principal criteria for this program. First you must be over age 65, be blind, or be disabled. Secondly, you must meet very strict financial regulations. To determine your eligibility the SSA will evaluate your income and financial resources. These include wages, pensions, stock holdings, real estate, cash savings, and other benefit programs. For more information regarding SSI, visit this page. 

How To Meet Medical Eligibility for SSD benefits with Cushing’s Syndrome

If you meet the SSA’s definition of disability and the SSI or SSDI technical eligibility requirements, you will then be evaluated medically. Many conditions and their medical eligibility criteria are listed in the SSA’s publication of disability conditions—known as the Blue Book.

Unfortunately Cushing’s syndrome is not specifically listed in the “Blue Book”. However, individuals with Cushing’s syndrome may qualify for benefits under a separate listing related to their specific impairments and limitations. These may include the following listings:

Access all Blue Book listings, here.

Because Cushing’s syndrome affects people in different ways and has a variety of different symptoms, it is not likely that an individual with this condition will fit under one specific listing. If you find that this is the case, you may qualify under something known as a medical vocational allowance.

Essentially, a medical vocational allowance is when the SSA evaluates a disability claim and finds that although the applicant’s specific condition is not listed in the Blue Book, the person is in fact disabled by their condition. The SSA will look at factors such as physical ability, mental ability, age, and job training.

Applying for SSD benefits

To prepare for your application you will need to gather all medical records and documents that can help demonstrate the degree of your impairment. Medical documentation should include a record of your diagnosis, the findings of physical and mental examinations, a history of treatments and your response to them, as well as written statements from your treating physicians.

It is important to keep in mind that over half of applications are initially denied. This is because most applications are found to be incomplete or do not include enough information. Be sure to give as much detail as you can on your application and provide full responses to all questions.

To begin your application you can submit the necessary paperwork on the SSA’s website or in person at your local Social Security office. After submitting your initial application, you should receive a decision within several months.

Receiving a Decision

If your application is denied, it is important that you do not panic. You are allowed to appeal this decision within 60 days of receiving notice of denial. Filing an appeal will give you the chance to provide the SSA with updated information and make a stronger case for yourself. At this point in the application process, it may be in your best interest to retain the services of a qualified Social Security Disability attorney or advocate.

The appeals process is complicated and can be quite overwhelming. A legal processional will have a thorough understanding of the system and can work with you to present your case in the most successful manner.

If you have concerns about paying for an attorney, you should keep in mind that you will not be required to pay your attorney unless you are awarded benefits. Even then, the SSA has set specific limits on the amount of money a Social Security Disability attorney is allowed to charge. To learn more about how an attorney is paid, click here.

Social Security Disability Appeal

The appeals process consists of two parts—the reconsideration and the appeal hearing. Some states don’t have reconsideration and go straight to the appeal hearing. If, however, your state requires reconsideration, you will have to submit the following forms:

• The Reconsideration Disability Report- intended to provide the SSA with new information about your claim; and
• The Request for Reconsideration- intended to state your intent to appeal the SSA’s decision; and
• Authorization to Disclose Information to the SSA- intended as a medical release form.

The reconsideration stage of the appeals process provides applicants with the chance to refute any incorrect conclusions, to provide additional medical records, and to correct any errors made during the initial application.

If you are denied at the reconsideration stage, you will move on to the appeal hearing. During the appeal hearing, claimants are required to appear in front of an Administrative Law Judge (ALJ) to present their claim. Applicants are strongly advised to have legal representation at this point in the process.

Although the Social Security Disability appeals process is complicated, it is often a necessary step toward receiving financial assistance. In fact, many more applicants are approved at the appeals level than during the initial application. Once you are awarded benefits, you will be able to focus on your health rather than your finances.

Author: Molly Clarke (Winter, 2013)

Editor’s Note: Molly Clarke is a writer for Social Security Disability Help where she works to promote disability awareness and to assist individuals throughout the Social Security Disability application process. You can contact Molly at [email protected].

Social Security Disability

Through an email from NORD, the CSRF learned that public comment was being invited on possible changes to determination of Social Security Disability. The desire of the SSA is to handle more disability claims before they get to the time consuming hearing level. The CSRF continually hears from members who are pursuing disability and almost always, they need to go to the hearing level, primarily because no one in SSI understands the disorder. Thus, we had a rare opportunity to comment and perhaps get Cushing’s higher visibility. Working with our Medical Advisory Board, the CSRF drafted the response printed below. CSRF also sent a copy of our response to Abby Meyers, President of NORD. Abby commented, “All of us believe this is a wonderful opportunity for us to fix the disability system for people with unfamiliar diagnoses. The best way to do that is to encourage our medical advisors to develop sensible parameters for each disorder. So the simple fact that you submitted comments puts Cushing’s disease on SSA’s priority list. Let’s hope they invite you to submit more information about Cushing’s or invite you to one of their public meetings.”

The Cushing’s Support and Research Foundation
60 Robbins Rd., #12, Plymouth, MA 02360 www.CSRF.net
September 29, 2007

To Whom It May Concern:

This communication is being written in response to the request for comments in the Federal Register on improving the SSI disability process. The Cushing’s Support and Research Foundation (CSRF) is a non-profit organization providing support and information to patients and families affected by endogenous Cushing’s. The CSRF has a Medical Advisory Board comprised of expert endocrinologists and neurosurgeons and is an Associate Member of NORD and The Endocrine Society. The CSRF often hears from patients who have been denied SSI and are preparing for their disability hearing. Most of these patients express frustration about how little the SSA understands about Cushing’s. The symptoms of Cushing’s and the severity of symptoms vary widely between patients. Thus, we are not certain that a list of specific impairments or symptoms and their associated severity can be developed to ease the disability process. Our concern in developing such a specific list, is that patients that have variations in the symptoms would be denied because they do not “fit the mold”. Not all patients with Cushing’s would qualify for disability. Thus, our goal in writing this response is to provide some general thoughts on Cushing’s as it relates to disability, to provide some general information on Cushing’s, to identify some of the symptoms and severity that can contribute to disability, and to provide a list of “expert” physicians who given adequate time, might be able to generate some specific impairments and associated severity.

GENERAL THOUGHTS ON CUSHING’S RELATED TO DISABILITY

Endogenous Cushing’s is defined as a Rare Disorder and has an estimated incidence rate of 5-25 per million of population/year. Since Cushing’s is a Rare Disorder, many primary care physicians and even endocrinologists are unfamiliar with the diagnosis, treatment and recovery required. Many patients with Cushing’s go undiagnosed for many years prior to receiving a correct diagnosis, simply because it is a rare disorder and symptoms overlap ailments that are common in the general population. Once diagnosed, many patients are faced with requesting support for disability from physicians who have little knowledge of the disorder. Thus, we have 2 thoughts:

1. Perhaps a different disability procedure for Rare Disorders that utilizes expert physicians would be useful.
2. Because Cushing’s is difficult to diagnose and can lead to disability, we are certain that there are undiagnosed cases among those currently on disability. For example, recent studies have found that approximately 5% of poorly controlled diabetics actually have Cushing’s. Other potential high-risk populations such as those with osteoporosis, high blood pressure and obesity are currently under study. A study is also underway to determine if certain combinations of clinical symptoms might be useful in identifying patients who should be tested. The SSA could provide valuable assistance to patients looking for a diagnosis if records could be screened for the possibility of Cushing’s during the disability application process. Perhaps personnel doing medical evaluations for the SSA could be further educated on Cushing’s. We are certain that a panel of experts could identify subsets of patients that should be tested for Cushing’s.

GENERAL INFORMATION ON CUSHING’S

It is not necessary to provide a detailed description of Cushing’s in these comments. More information can be obtained from the medical literature, our web site at www.CSRF.net, and NIH Publication #02-3007, June, 2002, which can also be found at www.CSRF.net – Understanding Cushing’s – Fact Sheet. Generally, endogenous Cushing’s is caused by exposure to too much cortisol due to a pituitary tumor, or an adrenal or ectopic tumor.

SYMPTOMS AND SEVERITY

A list of symptoms can be obtained from a recent publication – Long-Term Impaired Quality of Life in Cushing’s Syndrome despite Initial Improvement after Surgical Remission, JCEM 91(2):447-453. If Cushing’s progresses beyond a mild form, most all patients complain of weight gain, a redistribution of fat to the face and the upper back (buffalo hump) resulting in extreme changes in their appearance. In the majority of cases, Cushing’s begins with mild symptoms and if left undiagnosed and untreated, both physical and mental symptoms progress to severe.

During Cushing’s, symptoms that can lead to disability, include fatigue, sleep disorders, depression and a multitude of associated mental changes such as mood swings, tearfulness, anxiety, etc. Cushing’s can also dramatically influence a person’s ability to concentrate and remember things, thus patients can have problems dealing with everyday life due to cognitive difficulties. Physically, patients can become extremely weak due to muscle atrophy and have difficulty walking short distances, rising from a chair or climbing any stairs, which can severely limit daily activities. Often, a combination of physical and mental symptoms contribute to disability.

After treatment of Cushing’s, patients require a period of time on replacement medication before their own HPA axis begins to function appropriately. Most experienced endocrinologists and neurosurgeons put the recovery time frame somewhere between 1 year and 18 months. Some patients have little difficulty during the recovery time period, while others have severe fatigue, weakness, pain and depression that can dramatically influence daily functioning. While most patients do improve during this time frame, some struggle with attempting to discontinue replacement medications for much longer. At the present time, it is not known why some patients recover much easier than others, but perhaps it could be associated with the length of time someone had Cushing’s and perhaps age plays a role.

While it is well demonstrated that following appropriate treatment, Cushing’s patients do improve, it is also widely recognized that not all symptoms resolve completely or may required extended periods of time. This is true for bone strength, mental function due to brain atrophy, diabetes, hypertension and muscle weakness, all of which can be objectively measured. In a survey of CSRF members done in 2002 (not published) only 36% of Cushing’s patients reported no residual symptoms, with the most common residual symptoms being fatigue, weakness, and mental/emotional issues. The severity of the remaining symptoms will determine if disability continues.

The above pertains to those patients who are successfully treated. In cases where the pituitary tumor cannot be surgically removed or an ectopic tumor cannot be identified, patients are faced with longer periods of time to endure symptoms.

EXPERT PHYSICIANS

The CSRF supports the consultation of expert physicians during all phases of Cushing’s. Those physicians listed on our Medical Advisory Board are known to be excellent in their field and well respected by their peers. There are also additional expert physicians listed at www.CSRF.net – Cushing’s Doctors. A number of our Medical Advisory Board physicians have provided input to this document and particularly agree that a different disability procedure for Rare Disorders that utilizes expert physicians would be helpful.

Thank you in advance for your consideration. Please let us know if we can be of further help.

Sincerely,

Louise Pace – President, CSRF

Karen Campbell – Director, CSRF

Jennifer Kirkland, PhD
Neuropsychologist
CSRF Member

Dr. David Cook, MD
Endocrinology & Diabetes
Pituitary Diseases Clinic
Oregon Health Sciences University
Portland, Oregon

Dr. Edward R. Laws, MD, FACS
Department of Neurosurgery
Brigham and Women’s
Boston, MA

Dr. Anne Klibanski, M.D.
Professor of Medicine
Harvard Medical School
Chief, Neuroendocrine Unit
Massachusetts General Hospital
Boston, MA

Dr. Martin Weiss, MD
Chief, Department of Neurosurgery
University of Southern California
School of Medicine
Los Angeles, CA

 

New Financial Assistance Program Available for Cushing’s Patients!

Cushing’s patients being treated with medications (such as Signifor and Korlym) may now be eligible to receive co-pay assistance from the Patient Access Network (PAN) Foundation! PAN is an independent, nationwide nonprofit that provides co-pay assistance for underinsured chronically and critically ill patients. Their more than 50 disease-specific programs help tens of thousands of patients each year afford the out-of-pocket costs associated with their specialty medications.

About PAN’s Cushing’s Disease Assistance Program:

Cushing’s patients will be eligible to receive an initial grant of $3,800 with the ability to request additional funds within the same eligibility cycle (12-months) if funding is available. Patients must have some form of insurance (Medicare included) that covers a part of the cost of the medication for which they are seeking assistance, must have a household income at or below 500% of the federal poverty level, and must reside and receive treatment in the U.S.

How to Apply for Assistance:

Apply Online: www.PANfoundation.org

Apply Over the Phone: 866-316-PANF (7263)

What to Expect:

PAN assistance is free for patients and their healthcare providers. Eligibility determination is made within ONE minute of receiving a completed application. Patients may change medications, physicians and pharmacies so long as they continue to meet other program eligibility requirements (income level and insurance). PAN is able to reimburse patients for expenses incurred up to 90-days before their initial grant approval. PAN pays providers or specialty pharmacies directly so that you will not have to pay out of pocket and wait to be reimbursed.

Prescription Hope Prescription Assistance

Prescription Hope is a patient assistance association that helps people with low income receive their necessary medications for a low cost. They have 1500 drugs that are covered. You may be eligible if you do not participate in Medicaid and earn $30,000 or less per year as a single person or $50,000 or less as a couple. (These are average figures; some pharmaceutical company’s guidelines may be higher.)

http://www.prescriptionhope.com

 

Need Help with Insurance?

Patient Services Incorporated is a non-profit organization that can provide assistance in answering insurance questions and locating affordable insurance. While Cushing’s is not one of the disorders covered in their financial assistance plans, their web site contains valuable information.  1-800-366-7741

Travel and Housing Assistance

If you’re not lucky enough to live near a center of excellence for Cushing’s treatment, you may need to travel far and often to get the best medical care. This can be a huge financial burden, as even those who have health insurance may find that travel costs are not covered. There are organizations that assist those in need of travel for medical purposes. Each organization has its own criteria, so you need to contact each one to find out if they are able to help in your particular situation. CSRF does not endorse any particular organization; rather, we are making this list available to our members, and would welcome any feedback you might have.

Angel Flight, If you go to this website and enter your state, it will direct you to the chapter that handles your geographic area. Phone: 1- 918-749-8992

Miracle Flights for Kids, toll-free phone 1-800-FLY-1711. Despite the title, their services are not limited to children.

Mercy Medical Airlift, toll-free phone 1-800-296-1217.

National Patient Travel Center, Provides information about all types of charitable long distance medical transportation.

Airlift Hope America, serving patients departing from North Carolina and Tennessee,

Air Compassion America, toll-free phone 866-270-9198

Air Compassion for Veterans, toll-free phone 888-662-6794

Air Charity Network, toll-free phone 877-621-7177

Angel Bus, Ground transportation, toll-free phone 1-800-768-0238

Children’s Flight of Hope, phone (919) 466-8593

Hope Air, serving Canada, toll-free phone 1-877-346-HOPE

Kid One, serves specific counties in Alabama, toll-free phone 800-543-7143

Angel MedFlight, Air Ambulance for critically ill or seriously injured patients,

Northwoods Air Lifeline, serving flights originating in Michigan’s Upper Peninsula and northeast Wisconsin, toll free phone 1 – 800 – 311 – 1760

Operation Liftoff, serves children, phone 1-(314) 298-9770

Wings of Mercy East Michigan, serving those within 600 miles of East Michigan, toll free phone 1- (866) 32-MERCY

Southwest Airlines Medical Transportation Grant Program, provides complimentary round trip tickets to some non-profit hospitals and medical transportation companies. 

Housing
And once you get there, Homes that Help and Heal, can help you find a place to stay.

A number of hotels offer a hospital rate if you ask.