Table of Contents
Version 2; Updated February 2015
Welcome from the Administrator
Important Contact Information
The James Zadroga 9/11 Health and Compensation Act
Overview of 9/11 Health Services
Clinical Centers of Excellence
Program at a Glance
Getting Medical Care
Member Rights and Responsibilities
Privacy Practices in the WTC Health Program
Fraud and Abuse
Welcome to the World Trade Center (WTC) Health Program
Dear WTC Health Program Member,
Welcome to the WTC Health Program! The Program offers high-quality, expert, and compassionate care to you and others like you who were exposed to toxins and psychological stressors related to the September 11, 2001, terrorist attacks at the WTC, the Pentagon, and Shanksville, Pennsylvania. We hope that the Program will provide you with the care and knowledge necessary to help you address and manage any health concerns you might have related to your 9/11 exposures.
This WTC Health Program Member Handbook describes your benefits in the Program through Clinical Centers of Excellence (CCEs) in the New York metropolitan area. We hope the information helps you better understand and get the most out of your benefits through the Program. It is important to us that you have a positive experience with the Program. Please feel free to contact us toll-free at 1-888-982-4748 if we can answer any questions or address concerns you may have.
John Howard, M.D.
Administrator, World Trade Center Health Program
The James Zadroga 9/11 Health and Compensation ActOn January 2, 2011, the President signed into law the James Zadroga 9/11 Health and Compensation Act (Public Law 111-247). The Zadroga Act modified the Public Health Service Act to extend and improve protections and services to individuals directly affected by the terrorist attacks that occurred on September 11, 2001. The Zadroga Act also:
- Established the WTC Health Program (the Program)
- Reopened the September 11th Victim Compensation Fund (VCF)
- Extended the WTC Health Registry
WTC Health ProgramThe Program provides medical monitoring exams ; medical and mental health treatment for certified WTC-related health conditions; and social services assistance to 9/11 rescue, recovery, restoration, and clean-up workers and volunteers (WTC responders). The Program also provides an initial health evaluation to those individuals who lived, worked, or attended school or daycare in Manhattan south of Houston Street or within a 1.5 mile radius of the WTC site in Brooklyn (WTC survivors ). The Program offers follow-up medical exams and treatment for WTC survivors with certified WTC-related health conditions.
This handbook will provide you with detailed information about these services as well as your benefits, rights, and responsibilities as a member of the Program.
September 11th Victim Compensation Fund (VCF)The September 11th Victim Compensation Fund (VCF) is a compensation program administered by the United States Department of Justice. The VCF is not a medical treatment program. It provides compensation for economic and non-economic loss to individuals or relatives of deceased individuals who were killed or physically injured as a result of the terrorist-related aircraft crashes of September 11, 2001. WTC responders and WTC survivors who became physically ill due to 9/11 exposures may also be eligible for compensation through the VCF if all other VCF eligibility criteria are met. The Fund does not compensate for mental health conditions related to 9/11 exposures.
For more information about the VCF, including whether or not you might be eligible, please contact the VCF directly at 1-855-885-1555 or www.vcf.gov.
WTC Health RegistryThe WTC Health Registry was developed to document and evaluate the long-term physical and mental health effects of 9/11. To date, the Registry is the largest effort in the U.S. to monitor the health of people exposed to a large-scale disaster. Enrollment in the Registry was open from September 2003 through November 2004, and is now closed. During that time, more than 71,000 people enrolled by completing a 20 to 30 minute telephone interview.
The results of these surveys will help determine to what extent physical and mental health conditions have persisted in 9/11-exposed populations, and whether any new symptoms and conditions have emerged. Another important goal is to identify and help address gaps in physical and mental health treatment in these groups.
The WTC Health Registry was planned by the New York City Department of Health and Mental Hygiene and the federal Agency for Toxic Substances and Disease Registry (ATSDR). It has been funded by the National Institute for Occupational Safety and Health (NIOSH) since May 2009.
For more information about the WTC Health Registry, please contact the WTC Health Registry directly at 1-866-692-9827 or email@example.com.
Overview of 9/11 Health ServicesSince the terrorist attacks of September 11, 2001, the U.S. Department of Health and Human Services (HHS), Centers for Disease Control and Prevention (CDC), National Institute for Occupational Safety and Health (NIOSH) has funded health evaluations and screenings for WTC responders to identify any health issues resulting from their exposure to the environment created by the collapse of the WTC buildings. This program was called the WTC Medical Monitoring and Treatment Program. Federal funding for the WTC Environmental Health Center (for WTC survivors ) began in 2008.
Following implementation of the James Zadroga 9/11 Health and Compensation Act , the current WTC Health Program was established. Administered by NIOSH, the Program now provides services to four 9/11-affected populations:
Fire Department City of New York (FDNY) Responders: Active and retired FDNY firefighters and EMS workers. FDNY Responders receive Program services through the "Fire Department City of New York Clinical Centers of Excellence" . Retired FDNY responders can receive care through the FDNY Program or the Nationwide Provider Network (NPN) .
General Responders: Non-FDNY rescue, recovery, restoration, or clean-up workers and volunteers who participated in the WTC rescue and recovery efforts at various sites involved in 9/11 events. General Responders receive Program services through the CCEs or the NPN.
Pentagon and Shanksville, PA Responders: Emergency responders, recovery, and cleanup workers, and volunteers who were directly involved in the response to the attacks on the Pentagon in Arlington, VA, and the passenger-jet crash site near Shanksville, PA, on September 11, 2001 and during set periods afterwards. Pentagon and Shanksville Responders receive Program services through the CCEs or the NPN.
Survivors: Individuals who were in the New York City Disaster Area in Lower Manhattan and northwest parts of Brooklyn on September 11, 2001, or that lived, worked, went to school or day care for the weeks and months that followed. WTC Survivors receive Program services through the Survivors' program at the WTC Environmental Health Center CCE or the NPN.
WTC Responders and WTC Survivors who reside outside of the NY metropolitan area: WTC responders and WTC survivors who reside outside of the NY metropolitan area receive Program services through the NPN. For more detailed information on the NPN and receiving care outside of the NY metropolitan area, please consult the "WTC Health Program Member Handbook—Nationwide Provider Network" online at www.cdc.gov/wtc/memberhandbook.html.
Is the WTC Health Program a Health Insurance Plan?No. The Program is not an insurance plan. For eligible members, the Program covers initial health evaluations, yearly medical monitoring exams, and medical and/or mental health treatment only for specific certified WTC-related health conditions . For a list of those conditions, see section entitled "List of WTC-Related Health Conditions Covered By the Program".
If your WTC Health Program physician thinks you might have a health problem that is not covered by the Program, he or she will advise you about how to find care outside of the Program. You will have to pay for care received outside of the Program. If you do not have insurance, your WTC Health Program physician will refer you to a staff person who can help you determine if you might be eligible for public health insurance programs like Medicaid or Medicare . If not, that person can help you to get the care you need at a federally qualified health center, or other community health center, that offers more affordable care options for you.
Is the Program a Research Study?The main goal of the Program is to provide treatment for people with certified WTC-related health conditions. When you come in for an exam, you will be asked if the CCE can add your medical information to the data which researchers are using to understand 9/11 health effects. Participation is optional. You will receive your exam and continue to receive treatment even if you do not agree to share medical information for research purposes.
WTC Health Program Handbook for CCE MembersThis member handbook was written especially for WTC responders and WTC survivors who receive their care from a CCE located in the NY metropolitan area. The purpose of the handbook is to inform you about Program services, benefits, and your rights and responsibilities as a Program participant. In the handbook, you will find information about:
- Medical monitoring exams and Initial health evaluations
- Medical and mental health treatment services offered by the Program
- Benefits counseling services to assist you in accessing other benefits
- How your WTC-related medical and mental health conditions can be certified so that your treatment can be paid for by the Program
- Cancer care
- How to get your prescriptions filled
- Your appeals rights as a Program participant
- Your rights and responsibilities as a Program participant
Program at a Glance
Convenient CareThe Program provides care at multiple CCE locations throughout the NY metropolitan area. In addition, the NPN has been established to provide care to WTC responders and WTC survivors who live anywhere in the United States outside of the NY metropolitan area. The Program was specifically set up this way so that it would be convenient for you to access care near your place of work or residence. It also permits continuity of care in the event that you move and need to locate healthcare providers close to your new residence. The clinic listing in the "Getting Medical Care" section.
Competent CareThe Program's medical and mental health providers and benefits counselors have cared for tens of thousands of WTC responders and WTC survivors. Program providers have specialized expertise in the diagnosis and treatment of WTC-related physical and mental health conditions.
Comprehensive CareThe Program offers services to help you with your medical, mental health, and benefits needs related to your certified WTC-related health conditions . We recognize that illness not only affects your body, but also your mind, your work, your relationships, and your finances. Our staff experts work together to deliver comprehensive care so that you can address all of these related needs.
Compassionate CareBecause we have cared for tens of thousands of WTC responders and WTC survivors, we are familiar with and sensitive to how your experience may continue to affect you today. The Program offers a safe space to talk about what happened on 9/11 and how it might still affect you, your family, and your work.
Complementary CareThrough the James Zadroga 9/11 Health and Compensation Act , we are able to provide medical and mental health services at no cost to you. This means that you can access convenient, competent, comprehensive, and compassionate care without having to pay any co-payments, deductibles, or other out-of-pocket expenses for treatment of your certified WTC-related health conditions.
Initial Health Evaluations For WTC Survivors: Initial Health Evaluations
New WTC survivor enrollees in the Program are called screening-eligible survivors . The Program offers a one-time, initial health evaluation to all screening-eligible survivors. Only one screening evaluation can be paid for by the Program. The purpose of theinitial health evaluation is to find out if you have a condition(s) related to your 9/11 exposures that is covered under the Program. Only WTC Health Program physicians may conduct an initial health evaluation. The initial health evaluation consists of the following:
- Blood tests
- Breathing test
- Chest x-ray
- Questionnaires to evaluate your 9/11 exposures, health complaints, medical history, and mental health
- Screening colonoscopy for members aged 50 and over
- Screeningmammogram for female members aged 40 and over
Based on your initial health evaluation, there are three possible outcomes:
- The WTC Health Program physician tells you that you don't have any symptoms that are related to your 9/11 exposures. You will receive no additional services from the Program at this time. You will still be a member of the Program. If you develop symptoms in the future, you may request an additional health evaluation at your own expense.
- Your WTC Health Program physician tells you that you have symptoms that could be related to your 9/11 exposures, but that more information is needed to determine if you do have a WTC-related health condition
. The WTC Health Program physician will then advise you on any follow-up medical appointments, testing, or procedures that you might need in order to find out if you do have a WTC-related health condition.
Your WTC Health Program physician tells you that you do have one or more WTC-related health conditions that are covered by the Program. The Program covers a specific list of health conditions (see section entitled "List of WTC-Related Health Conditions Covered by the Program”). If your WTC Health Program physician determines that your health condition is on the list of covered health conditions and that your 9/11 exposures are substantially likely to have been a significant factor in aggravating, contributing to, or causing your health condition, then the WTC Health Program physician will request certification
of your health conditions from the WTC Health Program Administrator (the Administrator)
. For more information on certification, see section entitled "Certification of Your WTC-Related Health Condition(s).”
Medical Monitoring Exams For WTC RespondersThe Program offers yearly medical monitoring exams to WTC responders . The purpose of the monitoring exam is to monitor your health, whether you are sick or not. If you have a condition(s) related to your 9/11 exposures, medically necessary treatment is covered by the Program.
Your first medical monitoring exam is called a baseline monitoring exam. Each yearly exam after the first one is called an annual, or follow-up, exam. The chart below outlines what happens during a base-line monitoring exam and at annual monitoring exams.
|Exam Component||Baseline Exam||Annual Follow-up Exam|
|Medical History and Mental Health Questionnaires||X||X|
|9/11 Exposure Assessment||X|
|Vital Signs (blood pressure, pulse)||X||X|
|Spirometry/Pulmonary Function Testing (Breathing Test)||X||X|
|Chest X-ray||X||Every 2 years|
|EKG (for members ages 45 and up, or if needed for medical reasons)||X||X|
|Screening colonoscopy (for members ages 50 and up)||X||How often you receive a colonoscopy depends on your health situation and recommendation of your healthcare provider|
|Screening mammogram (for female members ages 40 and up)||X||How often you receive a mammogram depends on your health situation and recommendation of your healthcare provider|
During your medical monitoring exam you will meet with a WTC Health Program physician who will examine you to see if you might have any health conditions related to your 9/11 exposures. Based on that evaluation, there are three possible outcomes to your medical monitoring exam:
- The WTC Health Program physician tells you that you don't have any symptoms that are related to your 9/11 exposures. These exams help you to track your health over time, and contribute to our understanding of how 9/11 affected WTC responders. As we learn more, we can develop better treatment approaches for you and your fellow WTC responders and improve future disaster response. The WTC Health Program physician will encourage you to return in one year for your annual medical monitoring exam.
- Your WTC Health Program physician tells you that you have symptoms that could be related to your 9/11 exposures, but that more information is needed to determine if you do have a health condition related to your 9/11 exposures. The WTC Health Program physician will then advise you on any follow-up medical appointments, testing, or procedures that you might need in order to find out if you do have a health condition related to your 9/11 exposures. The WTC Health Program physician will also encourage you to return in one year for your annual medical monitoring exam.
- Your WTC Health Program physician tells you that you do have one or more health conditions that are covered by the Program. The Program covers a specific list of health conditions (see section entitled "WTC-Related Health Conditions Covered by the Program”). If your WTC Health Program physician determines that your health condition is on the list of covered health conditions and that your 9/11 exposures are substantially likely to have been a significant factor in aggravating, contributing to, or causing your health conditions, then the WTC Health Program physician will request certification of your conditions from the Administrator. For more information on certification, see section entitled "Certification of Your WTC-Related Health Condition(s).” The WTC Health Program physician will also encourage you to return in one year for your annual monitoring exam.
Benefits CounselingThe Program offers benefits counseling to members. You might be eligible for benefits from the September 11th Victim Compensation Fund , workers' compensation , line-of-duty injury, disability pensions, Social Security, or other benefits programs. These benefits may provide more medical coverage for you and financial compensation for you and your family. At each CCE , there are staff members who can assist you in identifying the benefits you may be eligible for and explain how to apply for them. These staff members can also refer you to external experts in a specific benefits system if needed to help you further. If you are interested in benefits counseling services, request to meet with a benefits counselor at your CCE.
WTC-Related Health Conditions Covered by the ProgramThe Program covers a specific list of WTC-related physical and mental health conditions. If you are diagnosed with a health condition on the list and your WTC Health Program physician thinks that the health condition is related to your 9/11 exposures, then the WTC Health Program physician will request certification, or approval, of your condition(s) so that your treatment can be covered by the Program (see section entitled "Certification of Your WTC-Related Health Condition(s)”).
In addition to the health conditions listed, the Program also covers health conditions that result from the treatment of a certified WTC-related health condition or additional health conditions that result from the progression of a certified WTC-related health condition (these conditions are called medically associated health conditions ).
Acute Traumatic InjuryBurn
Other similar acute traumatic injuries
Chronic cough syndrome
Chronic respiratory disorder due to fumes/vapors
Gastroesophageal reflux disorder (GERD)
Interstitial lung diseases
Reactive airways dysfunction syndrome (RADS)
Sleep apnea exacerbated by or related to one of the above certified WTC-related health conditions
Upper airway hyperreactivity
WTC-exacerbated and new-onset chronic obstructive pulmonary disease (COPD)
Mental Health ConditionsAcute stress disorder
Anxiety disorder (not otherwise specified)
Depression (not otherwise specified)
Generalized anxiety disorder
Major depressive disorder
Posttraumatic stress disorder (PTSD)
Musculoskeletal Disorders (only for WTC responders)The Program covers the following specific WTC-related musculoskeletal disorders in certain situations if they were caused by your 9/11 work and you have proof that you received medical care for the injury on or before September 11, 2003:
Carpal tunnel syndrome (CTS)
Low back pain
Other musculoskeletal disorders
The following cancers have been added to the list of WTC-related health conditions by regulation:
Blood and Lymphoid TissueDiffuse non-Hodgkin lymphoma
Follicular [nodular] non-Hodgkin lymphoma
Leukemia of unspecified cell type
Malignant immunoproliferative diseases
Multiple myeloma and malignant plasma cell neoplasms
Other and unspecified malignant neoplasms of lymphoid, hematopoietic and related tissue
Other and unspecified types of non-Hodgkin lymphoma
Other leukemias of specified cell type
Peripheral and cutaneous T-cell lymphomas
Childhood CancersAny type of cancer diagnosed in a person less than 20
Any type of cancer that occurs in less than 15 cases per 100,000 persons per year in the United States (based on 2005–2009 average annual data age-adjusted to the 2000 U.S. population).
Malignant neoplasm of breast
Female Reproductive OrgansMalignant neoplasm of ovary
Malignant Neoplasms of the Digestive SystemColon
Liver and intrahepatic bile ducts
Other and ill-defined digestive organs
Retroperitoneum and peritoneum
Malignant Neoplasm of Eye and OrbitEye and adnexa
Malignant Neoplasms of the Head and NeckAccessory sinuses
Base of tongue
Floor of mouth
Other and ill-defined conditions in the lip, oral cavity, and pharynx
Other and unspecified major salivary glands
Other and unspecified parts of mouth
Other and unspecified parts of tongue
Malignant neoplasms of the Respiratory SystemBronchus and lung
Heart, mediastinum and pleura
Other and ill-defined sites in the respiratory system and intrathoracic organs
Malignant Neoplasm of the Urinary SystemBladder
Kidney except renal pelvis
Other and unspecified urinary organs
Malignant neoplasm of Skin (non-Melanoma)Scrotum
Other malignant neoplasm of skin
Malignant Neoplasm of the Soft TissuePeripheral nerves and autonomic nervous system
Other connective and soft tissue
MelanomaMalignant melanoma of skin
ThyroidMalignant neoplasm of thyroid gland
Note: The list of WTC-related health conditions provided on the previous pages reflects the language found in the Federal laws and regulations that govern the WTC Health Program. It has been formatted for viewing and organized alphabetically for ease of use. If you are interested in seeing the laws and regulations in their original format, this and other information on the WTC Health Conditions Program can be found at www.cdc.gov/wtc/regulations.html.
Adding to the List of WTC-Related Health ConditionsThe Administrator has the authority to add new health conditions to the list of WTC-related health conditions. For example, a condition may be added if the Administrator finds there is enough evidence to link a health condition to 9/11 exposures. This might happen if research shows that a health condition is more likely to occur in individuals with 9/11 exposure than in individuals without 9/11 exposure. You may have a condition you believe is the result of your 9/11 exposure but that is not included on the list of WTC-related health conditions. If this is the case, you or any interested party may petition the Administrator to add a medical condition to the list of WTC-related health conditions. In order to be considered, a petition must be sent in writing to the Administrator, state the intent to petition, and include the following:
- Name and contact information of the interested party;
- Name and description of the health conditions(s) to be added; and
- Reasons for adding the health conditions (s), including the medical basis for the association between 9/11 exposure and the health condition(s) to be added.
- A petition form has been developed and may be found at www.cdc.gov/wtc/petitions.html.
Certification of Your WTC-Related Health Condition(s)The Program will pay for treatment of your WTC-related health condition(s) if your condition(s) has been certified. Your WTC Health Program physician will request that the Administrator certify your WTC-related health condition if:
- The health condition is included on the list of WTC-related health conditions; or
- The health condition is medically associated with a certified health condition included on the list of WTC-related health conditions; and
- Your WTC Health Program physician determines that your 9/11 exposures are sub-stantially likely to have been a significant factor in aggravating, contributing to, or causing the health condition.
Your WTC Health Program physician will complete paperwork (called the WTC-3 Certification Package ) to request that your health condition(s) be certified by the Administrator. The certification package includes information about you, your health conditions, and your 9/11 work and exposures. The Administrator and his medical staff will review the paperwork to decide if your health condition can be certified. The Administrator will certify your health condition if he finds that:
- The health condition is included on the list of WTC-related health conditions; or
- The health condition is medically associated with a certified health condition included on the list of WTC-related health conditions; and
- Your 9/11 exposures are substantially likely to have been a significant factor in aggravating, contributing to, or causing the health condition.
The Administrator's certification decision will be sent to both you and your WTC Health Program physician.
For some WTC-related health conditions, a fourth requirement must be met for the condition(s) to be certified by the Administrator. For cancers and aerodigestive disorders, the Administrator will also consider the date when you were first diagnosed with the condition when making a certification decision. For more information about time requirements for cancer, see section entitled "Latency ” under "Cancer Care”.
Maximum Time Intervals for Aerodigestive DisordersThere are five categories, or groupings, of aerodigestive disorders. Each category includes WTC-related health conditions that can be certified if all certification requirements are met. The Administrator has decided on maximum time intervals for each of the five categories of aerodigestive disorders. The Administrator selected the time intervals based on the best available published science and the Program's clinical experience since 2001.
The maximum time interval is the maximum amount of time that could have gone by between the last date of your 9/11 exposure and the initial onset of an aerodigestive disorder. Your aerodigestive disorder must have started during that time frame in order for it to be certified and covered by the Program. The maximum time intervals for each of the five categories of aerodigestive disorders are as follows:
|Category||Types of Diseases||Conditions Included||Maximum Time Interval|
|1||Obstructive Airways Diseases||Chronic respiratory disorder
Chronic cough syndrome
|2||Upper Respiratory Diseases||Upper airway hyperreactivity
|3||Interstitial Lung Diseases||All types of interstitial lung diseases||No maximum time interval|
|4||Co-occurring GERD||GERD in combination with a condition in Category 1, 2, or 3||5 years|
|5||Isolated GERD||GERD with no other diagnosed 9/11-related health condition||1 year|
Certification: Frequently Asked Questions
What happens if my WTC Health Program physician does not request certification of my health condition?If you think you have a WTC-related health condition but your WTC Health Program physician determines that your condition is not related to your 9/11 exposures, you have a right to request a secondary review of this decision by the Medical Director of your CCE.
Each CCE has operational procedures for conducting this secondary review. Your CCE will provide you with instructions on how to request a review. This will involve a written letter to the CCE Medical Director explaining why you disagree with your WTC Health Program physician's determination not to request certification. The CCE Medical Director or a designated secondary reviewer will use your medical records and the information in your letter to conduct a review of this decision, and come to a final decision. You will receive a written letter from your CCE's Medical Director with the results of his or her review and any actions taken.
If the CCE Medical Director or designated secondary reviewer makes a positive determination, then the request for certification is submitted to the Program for consideration. If the CCE Medical Director or designated secondary reviewer agrees with your WTC Health Program physician's negative determination, then the request for certification is not submitted to the Program.
Once you receive the results of your review from your CCE Medical Director, you do not have any further formal review rights from the Program. This decision constitutes the final action of the CCE on behalf of the Program. If at any point you have concerns about how the CCE has handled your case or care in the WTC Health Program, you may always send a letter to the WTC Health Program informing them of your concerns.
After my WTC Health Program physician submits a certification request, can I receive treatment for my condition(s) while I am waiting for the Administrator to make a decision about the certification request?While the Administrator considers the request to certify your health condition(s), you may temporarily be provided treatment services paid for by the Program if your WTC Health Program physician requests it of the Program. If your certification request is later denied, then the Program will no longer cover treatment for that condition.
What happens if my health condition is certified?If the Administrator certifies your health condition as WTC-related, then the Program will cover all medically necessary treatment of your health condition in accordance with WTC Health Program protocols. This could include doctors' visits, consultations with specialists, medical procedures or tests, medications, hospitalization, surgery, and other services.
What happens if my certification request is denied by the Administrator?If the Administrator does not certify your health condition, then you have the right to appeal that decision.
If you would like to appeal the denial decision, you must mail or fax a written letter to the Program's appeals coordinator within 60 calendar days from the date of your denial letter from the Administrator.
Your appeal letter must include the following information:
- The name, address, and contact information of the individual who is requesting the appeal; and
- A clear statement of the reason(s) why you think the denial was wrong. For example, you can state that the denial was based on factually inaccurate information, the Program's policies and procedures were not applied correctly to the facts of your case, or the denial was not reasonable as applied to the facts of your case.
WTC Health Program
P.O. Box 7000
Rensselaer, NY 12144
WTC Health Program
P.O. Box 7000
Rensselaer, NY 12144
Within 14 days of receiving an appeal request, the appeals coordinator will notify you by letter whether the appeal request is accepted or not. If an appeal request is accepted, the appeals coordinator's letter will also notify you of the name of the federal official who will review the appeal.
You can request the opportunity to make an oral statement to the federal official when you send your appeal request letter to the appeals coordinator, or within 14 calendar days of receiving the letter from the appeals coordinator notifying you that your appeal request was accepted and providing the name of the federal official who will review your appeal.
You can also designate someone to represent your interests during the appeal process. You can designate a representative by sending a letter to the appeals coordinator. For more information on designated representatives , please refer to the Program's website at www.cdc. gov/wtc/regulations2.html#reg42cfr88
Appeals will be reviewed by the federal official. If the appeal review is going to take longer than 60 calendar days from the date of the letter notifying you that the appeal request was accepted, the appeals coordinator will send a letter and provide a written explanation of the delay and the estimated date the review is expected to be completed.
For more information on the appeals process, including how to make an oral statement and how to designate a representative, please see the Program's website at www.cdc.gov/wtc.
Treatment AuthorizationIf the Administrator certifies your health condition(s), then the Program will cover the costs of your medically necessary treatment for that health condition(s). At your CCE, you will see a WTC Health Program physician who will oversee treatment of your certified WTC-related health conditions. The Program has developed medical treatment guidelines for common WTC-related health conditions. Your WTC Health Program physician uses those guidelines to determine whether or not a particular treatment for your health condition is medically necessary. If so, then that treatment is covered by the Program at no cost to you.
Your WTC Health Program physician will act like a primary care provider for your certified WTC-related health conditions only. If your WTC Health Program physician thinks that you need to see a specialist to diagnose or treat a certified WTC-related health condition, she or he will refer you to a specialist that is affiliated with the Program. For example, if you have asthma, your WTC Health Program physician might refer you to a pulmonologist who is affiliated with the Program. Your WTC Health Program physician and the specialist will communicate about medically necessary treatment for your certified WTC-related health conditions.
All Program treatment services must be authorized , or approved, by your WTC Health Program physician. For example, if you are referred to a specialist and that specialist recommends medical testing or prescriptions for you, then your WTC Health Program physician will review the request and decide whether or not to authorize, or approve, the recommended testing or medications (Level 1 Authorization). In some cases, your WTC Health Program physician must seek authorization , or approval, from your CCE Medical Director (Level 2 Authorization) or the Program's Medical Benefits Manager (Level 3 Authorization) in order for a medically necessary treatment service to be covered.
Level 1 AuthorizationMost medically necessary treatment services require a Level 1 Authorization . A Level 1 authorization means that your WTC Health Program physician must authorize, or approve, the treatment service before it is rendered to you. The following treatment services require a Level 1 authorization:
- Doctors' visits and specialty consults
- Flu and pneumonia vaccines
- Lab work, such as blood tests
- Medical tests and procedures used to figure out if you might have a WTC-related health condition(s) or medically associated health condition(s)
- Most surgeries
- MRIs, CT scans, other types of imaging studies
- Pharmacy benefits (see section entitled "Pharmacy Benefits" for more detailed information).
Level 2 and Level 3 AuthorizationsSome medically necessary treatment services require authorization, or approval, by your CCE Medical Director (a Level 2 Authorization ) or by the Program's Medical Benefits Manager (a Level 3 Authorization ). If you need treatment services that require a Level 2 or Level 3 authorization, your WTC Health Program physician will request the authorization for you. The following services require a Level 2 or Level 3 authorization. A more detailed description of each of these services is provided below:
- Vaccines for shingles and whooping cough
- Smoking cessation therapy
- Inpatient care services
- Organ transplants
- FDNY family members' mental health treatment
- Family therapy and/or mental health counseling
- Substance abuse treatment programs
- Hospice care
- Home health services
- Skilled nursing facility/extended care services
- Durable medical equipment (DME)
- Medical transport/ambulance services
Vaccines for Herpes Zoster (Shingles) and Pertussis (Whooping Cough)Shingles and whooping cough vaccines are covered for members who are at risk for these illnesses, and are certified for one of the following WTC-related health conditions:
- Systemic cancer
- Lower airway disease (obstructive airway and restrictive lung disease)
- Lung transplant due to a WTC-related lung disease
Smoking Cessation ProgramThe Program covers smoking cessation counseling and/or drug therapy for members who are current smokers and are referred for smoking cessation counseling and/or drug therapy as part of the lung cancer screening program. The Program also covers these services for members who meet BOTH of the following criteria:
- Certified for a WTC-related aerodigestive disorder; mental health condition; or cancer; AND
- Meet the requirements for and need smoking cessation therapy according to the member’s WTC Health Program physician.
Inpatient Care ServicesThe Program covers inpatient treatment and services if those services are medically necessary to treat your certified WTC-related health condition(s). Inpatient care covers hospital services, including semi-private rooms, meals, general nursing, and drugs as part of your inpatient treatment, and other hospital services and supplies. This includes the care you get in acute care hospitals, critical access hospitals, inpatient rehabilitation facilities, long-term care hospitals, inpatient care as part of a qualifying clinical research study, and mental healthcare.
In order for inpatient services to be covered, your CCE Medical Director must authorize, or approve, the services before you are hospitalized or admitted to an inpatient facility. In some cases, if you need services such as an organ transplant or some types of surgery, the services must be approved by the Program's Medical Benefits Manager before they are rendered.
It is important to work closely with your CCE case management team if inpatient care is needed so that the services can be appropriately authorized, or approved, by your CCE Medical Director or the Program's Medical Benefits Manager.
What's not covered?
- Personal care items, like razors or slipper socks
- Private-duty nursing
- Private room (unless medically necessary)
- Television and phone in your room (if there's a separate charge for these items)
Organ TransplantsThe Program will cover organ transplants if specific circumstances are met. If you are interested in learning more about this, speak to your WTC Health Program physician.
Mental Health Services
FDNY Family Members' Mental Health TreatmentMental health treatment, including psychotherapy and medications, for FDNY family members can be covered under the following conditions:
- The member is a surviving immediate family member of one of the FDNY responders who were killed at the WTC site on September 11, 2001; and
- The member received treatment for a mental health condition included on the list of WTC-related health conditions on or before September 1, 2008; and
- The member's mental health condition has been certified by the Administrator.
Family Therapy and/or Marital CounselingIn certain circumstances, psychotherapy services for a member's family may be covered as part of the treatment of the member's certified WTC-related health condition. Marital counseling for a member and his or her spouse may also be covered in certain circumstances. If you are interested in learning more about this, consult your WTC Health Program physician or mental health provider.
Substance Abuse Treatment ProgramsThe Program will cover substance abuse treatment programs if the following three conditions are met:
- The member is certified for a WTC-related mental health condition; and
- The services are authorized by your WTC Health Program physician or mental health provider; and
- The provider or place providing your care is an affiliated provider/facility with the Program.
Hospice CareThe Program will pay for hospice services when therapies for a certified WTC-related health condition are no longer controlling the illness and the member's life expectancy is 6 months or less. Hospice care can be continued if the member lives longer than 6 months, as long as the CCE Medical Director reconfirms the member's condition.
The following hospice services can be provided when needed to care for a member's terminal certified WTC-related health condition:
- Physician Services
- Dietary counseling
- Drugs for symptom control or pain relief
- Durable medical equipment (such as wheelchairs or walkers)
- Grief and loss counseling for member and family
- Hospice aide and homemaker services
- Medical supplies (such as bandages and catheters)
- Nursing care
- Physical and occupational therapy
- Short-term inpatient care (for pain and symptom management)
- Short-term respite care
- Social worker services
- Speech-language pathology services
- Other services needed to manage pain and other symptoms related to the member’s terminal certified WTC-related health condition, as recommended by hospice
Home Health ServicesHome health services are personal care and related support services that enable Program members to live at home while receiving medically necessary treatment for a certified WTC-related health condition(s). These services must be authorized by your CCE medical director, and can only be authorized for 60 days at a time. Additional authorization is required if care is needed for a longer period of time.
Home health services may be covered if the services provided are necessary to treat your certified WTC-related health condition and you require the skilled services of at least one of the following:
- Medical social services under the direction of a physician
- Part-time or occasional services of a home health aide
- Part-time or occasional skilled nursing care provided by or under the supervision of a registered professional nurse
- Physical/occupational, or speech-language pathology services
- Routine and non-routine medical supplies
Skilled Nursing Facility/Extended Care ServicesThe Program will cover extended care services if you require skilled nursing or rehabilitation staff to manage, observe, and evaluate your care for a certified WTC-related health condition(s). Multiple circumstances must be met in order for these services to be covered. If you are interested in learning more about skilled nursing facility /extended care coverage, consult your WTC Health Program physician.
Durable Medical EquipmentDurable Medical Equipment (DME) is medical equipment used in the home, such as nebulizers, CPAP machines, hospital beds, wheelchairs, and other types of equipment. DME rental or purchase is a covered health service of the Program. In order to be covered, the DME must be necessary and reasonable to treat your certified WTC-related health condition(s). In addition, the DME must be ordered by prescription by your WTC Health Program physician or a specialist affiliated with the Program, and authorized, or approved, by your CCE Medical Director.
Medical Transport/Ambulance ServiceAmbulance services may be provided to you if you are receiving medically necessary treatment for a certified WTC-related health condition and this method of transportation is needed. Examples of when ambulance services may be covered are as follows:
- Air ambulance or boat ambulance transport when the pickup point is not accessible by a land vehicle, or when great distance or other obstacles are involved in transporting you to the nearest hospital with appropriate facilities. Your medical condition must require a rapid admission or show you are not able to be transferred by other means.
- Ambulance transfers from a hospital-based emergency room to a hospital more capable of providing the care you need for your certified WTC-related health conditions
- Emergency transfers to or from your home (or other location) to a hospital and transfers between hospitals
- Transfers between a hospital or skilled nursing facility and another hospital-based or freestanding outpatient therapeutic or diagnostic department/facility
All non-emergency ambulance services must be authorized, or approved, by your CCE Medical Director before the service is rendered. Emergency ambulance services require review and approval by your CCE Medical Director as soon as is practicable after the service is rendered.
The Program Does Not Cover:
- Ambulance service used instead of taxi service when the condition is not an emergency and private transportation is available
- Transport or transfer in order for you to be closer to home, family, friends, or personal physician
- Use of medicabs or ambicabs as a form of transportation to and from medical appointments
Medical EmergenciesA medical crisis can occur unexpectedly and after normal office hours. When that happens, the Program provides services for your certified WTC-related health condition .
Urgent Care (After Hours)Urgent care services are medically necessary treatment required for an illness or injury that would not result in further disability or death if not treated immediately, but does require professional attention within 24 hours. The Program provides payment for urgent care visits for your certified WTC-related health condition(s). If you need to go to an urgent care facility, be sure to contact your CCE as soon as possible to let them know.
Emergency Care ServicesThe Program defines a medical emergency as a serious medical or psychiatric condition that would result in a threat to life, limb or sight, or when a person is an immediate risk to self or others.
Examples of conditions where emergency care may be needed:
- Persistent suicidal or homicidal ideation
- Severe or persistent bleeding
- Severe shortness of breath
- Sudden onset of severe abdominal pain
In the event of a medical emergency, call 911 or go to the nearest emergency room.
You do not need to call your CCE before receiving emergency medical care. However, in all emergencies, you must notify your CCE within 24 hours or on the next business day following admission to coordinate ongoing care and to ensure you receive proper authorization .
When Traveling Outside Your Local AreaUrgent and emergency care for your certified WTC-related health condition(s) is available even when you are traveling outside of your local area. You should seek immediate treatment for any illness or injury that would be considered an emergency. If you are admitted to an inpatient facility, you must immediately notify your CCE. In other cases, you should notify your CCE within 48 hours of an emergency.
When seeking emergency care, please note that:
The Program does not cover emergency care services that are not related to your certified WTC related health conditions.
Member Rights and Responsibilities
Your Rights as a WTC Health Program Member
You have the right to:
Be assured of privacy and confidentiality:Your personal and medical information will be handled in a manner that preserves and protects your confidentiality. This includes, but is not limited to, the maintenance of medical records in a secure environment and the education of Program staff regarding confidentiality. The Program will not release medical information without authorization, except as required or permitted by law to administer benefits, comply with government requirements, or if you consent to participate in research or education.
Have access to treatment: You have the right to receive medically necessary treatment for a certified WTC-related health condition(s) if those conditions are certified by the Administrator . In addition, you have the right to be informed about the risks and benefits of treatment and to refuse care.
You also have the right to appeal the following decisions:
- A decision made by the Administrator not to certify a WTC-related health condition
- A decision made by the Administrator not to certify a health condition as medically associated with a WTC-related health condition
- A decision made by the Administrator not to authorize treatment due to a determination that the treatment is not medically necessary to treat a certified WTC-related health condition.
Voice complaints/grievances related to the Program: You have the right to voice your concerns and receive a prompt and fair review of any complaints you may have about the Program. For more information about the complaints procedure, please see section entitled "Complaints Procedure.”
Receive considerate, respectful care: In the Program, we strive to treat all members equally and with respect and dignity, regardless of race, religion, sex, sexual orientation, national origin, age, disability, or income. If you have any concerns about how you are being treated, please contact the Program's Member Services Department at 1-888-982-4748.
Your Responsibilities as a WTC Health Program Member
You are responsible for:
Knowing the extent and limitations of the Program's services: This handbook provides information about the Program. You are encouraged to contact the Program's Call Center toll-free at 1-888-982-4748 if you have questions.
Keeping appointments: You have a responsibility to keep your appointments. If you are unable to keep your appointment, notify your Program CCE within 24 hours of your appointment so that your appointment time can be given to another member.
Providing accurate and complete information: You are responsible for providing accurate and complete information about your present and past medical conditions to the Program. You are also responsible for submitting appropriate signed medical release forms so that the Program can obtain medical records as needed.
Active participation in your care: You have a responsibility to participate in your care by asking questions to understand your certified WTC-related health condition(s), following the recommended treatment plan, and making healthy lifestyle choices to try to maintain your health and prevent illness.
Fulfilling financial obligations: Treatment of your certified WTC-related health conditions will be provided at no cost to you as long as the provider and the services are appropriately authorized . Depending on the type of treatment services you need, services must be authorized by your WTC Health Program physician, your CCE Medical Director, or the Program's Medical Benefits Manager .
Showing consideration and respect: You have a responsibility to show consideration and respect to Program providers and staff. Disruptive or abusive behavior may impact the Program's ability to provide benefits to you in a timely manner.
Privacy Practices in the WTC Health ProgramThe Program is required, by law, to maintain the privacy and security of your personal health information and to provide you with notice of its legal duties and privacy practices with respect to how your personal health information held by the Program will be used and disclosed ("given out”) by the Program.
Program Uses and Disclosures of Your Personal Health InformationThe Program must use and disclose your personal health information to provide information:
- To you, someone you name, or someone who has the legal right to act for you. The Program will make sure that person has this authority and can act for you before we take any action.
- To the Secretary of the Department of Health and Human Services, if necessary, to make sure your privacy is protected; and
- Where required by law
The Program has the right to use and disclose your personal health information to provide you with treatment, to pay for your healthcare, and to operate the Program. Examples include:
- The Program will collect and use your personal health information to decide if the necessary requirements are met for coverage of your health condition(s) under the Program (conditions which meet these requirements are "certified” by the Program).
- The Program will collect and use your personal health information for the purposes of determining diagnosis and medically necessary treatment of "certified” health conditions.
- The Program will disclose your personal health information to the Centers for Medicare and Medicaid Services (CMS) in order for CMS to pay providers for eligible healthcare benefits you received.
- The Program will review and use your personal health information to make sure you are receiving quality healthcare.
The Program may use or disclose your personal health information for the following purposes under limited circumstances:
- To other federal and state agencies, where allowed by federal law, that need WTC Health Program health data for their program operations
- For public health activities (such as reporting disease outbreaks)
- For healthcare oversight activities (such as fraud and abuse investigations)
- For judicial and administrative proceedings (such as in response to a court order)
- For law enforcement purposes
- To avoid a serious and imminent threat to health or safety
- For purposes of reporting information about victims of abuse, neglect, or domestic violence
- To report information about deceased individuals to a coroner, medical examiner, or funeral director, or for organ or tissue donation purposes
- For research purposes, under certain conditions
- For workers compensation purposes
- To contact you about new or changed coverage under the Program
By law, the Program must have your written permission (an "authorization”) to use or disclose your personal health information for any purpose that is not set out in this notice including certain uses or disclosures of psychotherapy notes. In addition, the Program will not sell or market your personal health information without your written permission. You may take back ("revoke”) your written permission anytime, except to the extent that the Program has already acted based on your permission. If you take back your written permission, please provide that to the program in writing.
The Program is prohibited from using or disclosing your personal genetic health information (i.e., your genetic tests, the genetic tests of your family members and your family medical history) for purposes of determining your eligibility and enrollment into the WTC Health Program (i.e. underwriting).
Your RightsBy law, you have the right to:
- Receive a paper copy of this notice, upon request to the Program, even if you have received an electronic copy of this notice (i.e. email). The Program will provide you with a paper copy promptly.
- Receive an accounting (who and where) the Program has disclosed (given out) your personal health information for six years prior to the date you ask, who we shared it with and why. The Program will include all disclosures except for those about treatment, payment, and healthcare operation, and certain other disclosures (such as any you asked the Program to make). The Program will provide one accounting a year for free but will charge a reasonable, cost-based fee if you ask for another one within 12 months.
- Inspect (review) and copy your personal health information. You can ask to see or get a copy of your health and claims records and other health information that we have about you. Please contact the program about how to do this. The Program will provide a copy or a summary of your health and claims records, usually within 30 days of your request. The Program may charge a reasonable, cost-based fee.
- Amend your personal health information if you believe that it is wrong or if information is missing from your personal health records. Please note that the Program may deny your request to amend your personal health information if it believes the information in your records is accurate and complete. The Program will provide you with an explanation of the denial in writing within 60 days. If the Program declines to amend your records, you may have a statement added to your personal health records to reflect your disagreement.
- Receive confidential (private) communications from the Program when you are contacted regarding your personal health information. You may ask the Program to contact you in a specific way (for example, home or office phone) or to send mail to a different address.
- Request limitations on certain uses and disclosures of your personal health information by the Program. Please note that the Program is not required to agree to this requested limitation except under certain circumstances.
- Be informed of and receive notification if a breach occurs that may have compromised the privacy or security of your information.
WTC Health Program ResponsibilitiesThe Program is required by law to abide by the terms of this privacy notice. The Program has the right to change this privacy notice and the changes will apply to all of the information that we have about you. If the Program makes any changes to this notice, a copy of the revised notice will be made electronically available on the Program website and it will be mailed to you in the Program's next annual mailing. You may also request to receive a copy of the notice.
How to Contact the WTC Health ProgramYou can call 1-888-982-4748 to get further information about matters covered by this notice. Ask to speak to a customer service representative about the Program's privacy notice. To view an electronic copy of the Program's privacy notice, you can visit the Program's website at: www.cdc.gov/wtc.
How to File a ComplaintIf you believe that your privacy rights have been violated, you may file a complaint with the Program by calling 1-888-982-4748, or by sending a letter to P.O. Box 7000 Rensselaer, NY 12144 ATTN: WTC Health Program, HIPAA Complaint. Filing a complaint will not affect your coverage under the Program. You may also file a complaint with the Department of Health and Human Services Office for Civil Rights by sending a letter to 200 Independence Avenue, S.W., Washington, D.C. 20201, calling 1-877-696-6775, or visiting www.hhs.gov/ocr/privacy/hipaa/complaints/. TTY users should call 1-800-537-7697.
Complaints ProcedureAll Program healthcare providers and staff share responsibility for assuring member satisfaction. If you have a problem or concern about the services you receive, please do not hesitate to ask for help. Each CCE has an Administrator who is able to assist you with your concerns and complaints. If you have a problem with any aspect of the service you've received at your CCE, call or visit the administrative office at that facility.
If you are not satisfied with the way your complaint was handled, you can contact the Program's Member Services Department at 1-888-982-4748. A Member Services Associate will assist you in addressing your concern as best as possible. Be sure to provide complete information regarding the nature of your complaint, including names, dates and any other specific information so that the person with whom you speak can work with you to resolve your concern. If the complaint cannot be resolved by the Member Services Associate, it will be forwarded to the appropriate Program staff. We will make every effort to respond to your request as quickly and effectively as possible.