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2010 Top-Rated Nonprofit

Advocacy for Patients with Chronic Illness, Inc.

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Nonprofit Overview

Causes: Civil Rights, Disabilities, Disabled Persons Rights, Health, Human Services

Mission: Advocacy for Patients provides FREE information, advice and advocacy services to patients with chronic illnesses nationwide in areas including health and disability insurance, Social Security disability, employment discrimination, family and medical leave, educational equity, and resource location.

Geographic areas served: National

Programs: The center provides free information and advocacy services to over 1500 patients with chronic illnesses nationwide in the areas of health and disability insurance, social security disability, employment discrimination, family and medical leave, educational equity, housing and resource location. A website is maintained with educational materials at www. Thejenniferjaffcenter. Org and a blog with daily updates is also maintained through the center's website. The center also publishes an article that summarizes the results of a survey that the organzation conducts on living with chronic illnesses (see schedule o). The center has commented on federal health reform regulations, participated in meetings with federal agencies, engaged in health reform implementation and taken an active fole in commenting on state health reform implementation.

Community Stories

16 Stories from Volunteers, Donors & Supporters

1 Jackie16

Client Served

Rating: 5

Advocacy for Patients with Chronic Illness helped my son and I as we were dealing with a serious illness and had such a difficult time understanding the illness - 1st, and secondly understanding what help we were actually entitled to. It can be literally overwhelming to deal with a serious chronic illness, but it shouldn't be a fight on top of it to receive just a little bit of help. Advocacy for Patients supplies a wealth of information to help people like my son and I navigate the health care, insurance and medical community, which is critical when someone is seriously ill. I just don't know what we would have done without the guidance we received from this organization.

1

Client Served

Rating: 5

In fall of 2011 I began I PhD program for which I had a full fellowship. Due to reasons relating to my chronic illness, I took a leave of absence from school. I was wanting to know more about my legal rights if I could press the school to give me a half time fellowship and stipend. Advocacy for Patients with Chronic Illness researched my situation and gave me the scoop - basically there is not legal precedent and the the terms of the fellowship dictate full time status is required. Additionally APCI provided me information relating to health insurance since I lost my benefits when I withdrew from school and got denied from a regular independent plan. Also, in the midst of search for employment for myself I realized I was giving out too much information to potential employers and APCI gave me invaluable information about presenting myself, and not my chronic illness on job applications and interviews. Overall in 2012 this organization has had a substantial impact on my life during some difficult times for myself. It is a blessing to find a such a wealth of information relating to the legal ins and outs of living with chronic illness!

2 Christina24

Client Served

Rating: 5

This organization not only makes sure I am in the loop when issues pertinent to my illness through social media but every person who has an issue is treated like a person rather than a problem. I have had occasion to call the office and I was treated with respect and kindness. Even though my issue was a simple reference I have watched this organization long enough to say with confidence, lives have been saved that would have otherwise been lost all because of them and their tireless work for justice for people who are so often without a voice or whose voice is otherwise ignored.

1 Kristin K.

Client Served

Rating: 5

Advocacy for Patients with Chronic Illness helped me to live a normal life. Before receiving their assistance my life had become a shell of what it formerly was. My constant, excruciating head pain had removed me from my job, my social life, my family and even much of my marriage. Each day was a struggle made worse by my health insurance company's denials of the only promising treatment I had available to me. During his search for answers, my husband reached out to Jennifer Jaff, the Executive Director of Advocacy for Patients with Chronic Illness. She and her staff collected records and presented an appeal with me against my insurance company. When it was again denied, they did not stop working for me. The communication between them and my husband ,who worked as my representative, was incredible considering we were several states apart. They continued to push for my case and in the end it went to a third party reviewer who ruled in my favor. I had surgery in December of 2010 to have a nerve stimulator placed in my head and my head pain has been reduced 85-90%. I am able to enjoy my life again in a way I never imagined was possible just a few years ago. Advocacy for Patients with Chronic Illness does important work. I feel very blessed that we found them. I am amazed with how much they are able to do for so many with so few resources. Their efforts to provide free services to chronically ill people nationwide should be both applauded and supported.

Margie B.

Client Served

Rating: 5

My husband has a chronic illness. Advocacy for Patients with Chronic Illness has helped us understand his rights as a patient not only with a pre-existing condition but also as a working chronicly ill patient. We are better prepared for the changes that are coming in our situation. We have been given literature on our rights, how to file disability when the time comes, and local, state, and federal resources. We also have Advocacy for Patients to turn to if something goes wrong. Where else could we have gotten all of that? We also have the opportunity to ask questions of talented and knowledgable professionals in the medical law field. All of this has been provided free of charge.

1

Client Served

Rating: 5

Finding myself sick and wheelchair bound from severe tenosinovitis caused by Lupus plus the chemotherapy etc. was not helping anymore, my insurance comany (BCBS of NE) decided that Benlysta (which had been approved by the FDA) was an investigative treatment and would not be covered. They denied me and then denied the appeal from my rheumatolotist. I was just too sick at this point to fight them myself. Jennifer and Nicole took my case and forced the insurance company to cover the medicine that was necessary. It is a horrible state of affairs in my mind that the insurance company can not be trusted to be responsible, but on the other hand, thank God that there are people and a few intitutions like the Advocacy for Patients with Chronic Illness who can and are willing to be helpful. Rebecca

Client Served

Rating: 5

My son has crohn's disease and migraines. He is in junior high school in the New York City public school system, and it became clear to us that he needed accommodations in school. He was not doing well with his health, and was often absent. We requested a 504 plan, which is a plan to develop accommodations for students through the Americans with Disabilities Act. The school administration told us that they could not accommodate for him, and kept putting barriers to us getting a plan in place. I saw Jennifer Jaff's name as the author of the 504 template we were using, contacted her for help. She responded within 20 minutes to my email with such thoughtful advice. Every step of the way, Jeniffer has helped us deal with the school. She really understands the issues people with chronic illnesses are dealing with. She is intellegent, and a very good lawyer. I like that she helped us deal with the school effectively, while helping us avoid an uncomfortable confrontation with the administration. We absolutely love Jeniffer Jaff and her organization.

Client Served

Rating: 5

Advocacy for Patients with Chronic Illness, Inc is a wonderful organization run by a wonderful woman. JenniferJaff is a tireless and self-sacrificing person; a true mensch. I have a number of chronic illnesses and sometimes it can be overwhelming. However, I always know I can count on Jennifer for help, advice or just an ear when I need to vent. Trust me, I've done that many times. When you're chronically ill, sometimes it's hard for those who aren't to really get what you're going through. Advocacy does. It's great to have them in our corner. I've gladly recommended them to others.

Client Served

Rating: 5

Advocacy for Patients with Chronic Illness appealed my denial of disability retirement from the federal government and won. It wasn't just that. Jennifer Jaff made me feel like I wasn't a freak. Previously I'd worked for the IRS for nearly a decade. During that time I was a damned good employee, winning service awards, being relied upon by my managers to coach new employees, acting for my managers...I was a "golden child" until I got sick. Once I got sick, I was yesterday's trash. It hurt to be tossed aside. But Jennifer made me feel valuable. She made me feel like I deserved my disability retirement. She worked with me in writing the appeal. She made me feel human. I couldn't even begin to tell you how much that means to me. Winning the appeal was important; but feeling like I deserved it...Jennifer is an amazing person and her organization does amazing things!

Client Served

Rating: 5

This organization provides vital services and information that put simply, would not be accessible to it's target population. I have referred many friends and have never know anyone to be disappointed with the level of attention or speed in response. It is a totally unique organization with tremendous heart and soul. Truly a comfort to know I have Advocacy for Patients to turn to if need be.

Client Served

Rating: 5

My daughter has Crohn's Disease and we were faced with a situation wherein the insurance company would not pay for a new, very expensive medication. After receiving information on how to get the prescription paid, they did in fact begin covering the medication. It is a relief to know that there is someone out there who is just available to help without any commitment from us. The Advocacy for Patients with Chronic Illness, Inc. provides information that others tell you about, yet you have no idea where to begin. Here you get specific info., outlines, books, handbooks and even a personal conversation with Jennifer Jaff! I was and still am relieved to feel as if I have someone on my team when it comes to dealing with the daily difficulties of a child living with chronic illness.

Client Served

Rating: 5

We found this Charity through the Crohns and Colitis Foundation of America. Upon finding Advocacy For Patients With Chronic Illnesses we were in an extremely desperate position. My husband is diagnosed with Crohns Disease, Pyoderma Gangrenosum, Osteoporosis, Vascular Disease, he has a Fistula and a torn Meniscus. Five Specialist in 2 different states have said that he would lose his leg if he should return to work. The nurse from our private disability company, who has never seen my husband, decided all of the specialist were wrong and denied his coverage. We had been fighting this company for over 2 years. We sold a car and put our house on the market not being able to afford these 'luxuries' because of not knowing when the coverage was going to be denied yet again. We currently are living in my inlaws basement. I phoned AFPWCI. They were willing to help. Not only did they help, they did it in a timely manner. They took a personal approach and cared about the outcome of the case. The denial was overturned. For now we breath a bit easier, and live with less stress. I cannot thank them enough for the help they have given us.

Client Served

Rating: 5

I suffer from a severe pain condition. After being denied by my insurer two times for a nerve stimulator, the only available treatment for my condition, my husband and I were devastated. One day he found Advocacy for Patients with Chronic Illness, Inc. and Jennifer Jaff and suddenly she gave us hope. She took my insurance company to task. They received an appeal several inches thick that had been extensively researched. Although we are several states apart, I could not have felt more attended to. When I went in front of the appeal board, Ms. Jaff briefed me thoroughly the night before by phone and then was my council at the appeal by speakerphone. We were both much better prepared than the appeal board. Unfortunately, we were denied again, so she turned to my employer for a third party review. She called and e-mailed them often to let them know we were still waiting for a decision. After starting medical leave from work due to the pain, I received a call that the third party reviewer overturned the insurance company’s decision. Just recently, I was able to call my surgeon to start scheduling surgery. I have not had a day in over three years without constant stabbing head pain. What this organization did will change my life and they asked for nothing in return. I cannot speak highly enough of them.

Client Served

Rating: 5

Dealing with a chronic illness can be a challenging and exhausting experience. This is not only due to the increased emotional, financial, and physical costs of having an illness but also because you have to be your own advocate whether you feel up to it or not. Advocacy for Patients with Chronic Illness is a much needed organization and offers vital support in this regard. I visit the website and subscribe to the e-mail newsletter, which helps me to stay informed about my rights and offers other helpful tips for patients with chronic illnesses. I've also contacted Jennifer personally with legal questions through e-mail. She has always responded promptly, even though I know she must be busy. Her compassion and dedication are evident and inspiring. Just knowing this organization exists helps me as I deal with the implications of my illness and advocate for myself and others.

Client Served

Rating: 5

I found Jennifer, and Advocacy for Patients through Pearl Jam. My husband has a chronic illness. As his caretaker, I found Advocacy to be a valuable resource. I was able to find support groups, sources for legal help, and personal support from this organization. I was also able to find strength and my own voice as an advocate for a chronicly ill patient. Advocacy for Patients was, and continues to be a blessing.

6

Client Served

Rating: 5

When I called Advocacy for Patients over 2 years ago, I was at the end of my rope and afraid of loosing everything we worked hard to achieve. Jennifer Jaff immediately sprung into action, guiding me on how to resolve a very complicated insurance nightmare. She’s never dropped the ball and continues to work and respond quickly to assist and resolve problems. I was consistently impressed with the HUGE impact they were able to make with very limited resources – clearly indicating a commitment to serve a population of American’s who often are severely ill and have no place to go to learn how to advocate on their own behalf. Advocacy For Patients with Chronic Illness provides the place for patients to go to educate themselves and the FREE legal services provided are TOP NOTCH and provided by an attorney with the skills and personal experience that get results. I will be forever thankful for the experience and results received from Advocacy For Patients With Chronic Illness. The books and emails I receive from them are extremely helpful and educational; even if you don’t need their services, I suggest you get in contact with this non-for-profit, read their website and order their books, you’ll be glad you did. When you realize the service, education and advocacy they offer, consider a donation, because without them, the chronically ill will loose a valuable resource. A place for education, information and advocacy, from an organization with first hand experience and who knows what it means to have a chronic illness in America today.