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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

24 Stories from Volunteers, Donors & Supporters

1 Givingmommy

General Member of the Public

Rating: 5

They have were an indispensable resource for my brother and we will be forever grateful. He is chronically ill and the support he received before his passing was amazing.

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.

1 Carmen234

General Member of the Public

Rating: 5

This organization headed by Ms. Jennifer Jaff, is an outstanding source of information that is very helpful to all with chronic ilnesses, especially those with IBD. I bought the Know Your Rights Handbook and found it to be very helpful. It is comforting to know that there is a person, a group, really looking out for those with IBD. My son has Crohn's disease and I know that I can count on them to help me when I run into trouble getting help with whatever he might need. I am a member of CCFA and they are awesome, but Ms. Jaff takes it to a more personal level when helping you. Thanks to Ms. Jaff and her staff for being such a great source of help and support. Stay well.

Carmen Fiorelli, Madison, WI

1 Rebecca M.

Donor

Rating: 5

Jennifer is a skilled and knowledgeable lawyer with a number of victories to show for it. The book she wrote, "Know Your Rights," is incredibly useful as well.

Donor

Rating: 5

I donated very little but I've watched and witnessed what an amazing woman Jennifer Jaff is with her organization, fighting for people who can't fight for themselves. Jennifer, herself who has this painful disease, knows what it feels to be discriminated, ignored, etc while battling this disease and not getting support from people they loved because they don't understand the disease that overtakes this person's life. She listens, consults, advices, and supports...more importantly, readily to fight for them. She cares about every person she comes in contact with and treats them like any human being should be treated - unconditional love with no strings attached. She makes the person feel a person, not a disabled person.

1 Frank E.

Donor

Rating: 5

Jennifer Jaff is an attorney and helps thousands of chronically ill folks to resolve issues with their health insurers each year. She enables many, many people to receive life-saving treatments and prescriptions that have been denied. She does it all at no cost to the people she helps. My wife and I have donated to Advocacy for Patient with Chronic Illness and will continue to do that. As a person who has several chronic illnesses and who became unexpected disabled after working for thirty years as a science and medical librarian, I know what type of expertise this takes. Jennifer manages this organization out of her home with one other staff member and herself. I can't think of any other organization that does so much good with so little staffing. Any donation will be well used and benefit those who need it most.

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!

Professional with expertise in this field

Rating: 5

As a medical social worker at a large institution working with pediatric chronic illness, I regularly refer patients and families here for guidance and advocacy support on issues ranging from educational equity access to necessary medications for well-being, employment discrimination issues, and entitlement and legal rights. I have seen, first hand, the way that the organizations dedication, investment wisdom and compassion have directly led to successful outcomes that allow children to have access to their educational curriculums, obtain life-saving treatments that insurances initially deny, and permit parents to not have to choose between threats of losing a job and being with their child during scary hospitalizations. I have seen families lies be enhanced, health be improved and most critically, perhaps, hope be restored, all because of the tireless work and expertise offered by this organization. As a professional collaborator, the services are prompt, relevant and exhaustive. I have seen the extraordinary impact the organization and Ms. Jaff have on public policy awareness and education the community about evolving laws impacting patients’ rights, and the reach she has in various illness-focused professional organizations to be a consultant to health care providers on the front lines, so that their own care delivery can be enhanced with the right strategies for patient advocacy. The organization and it’s commitment to equality helps teach me how to be a better clinician. It gives a 5-year-old with a lifelong chronic illness, a chance to be a 5 year old.

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.

General Member of the Public

Rating: 5

I was diagnosed with Crohn's disease in 2001 at the age of 38. After a constant battle, several surgeries, 18 blood transfusions, and more medications than I can remember. I’ve experienced events that will haunt me forever. My disease has taken my life hostage, twisted it, making each day a constant battle just to survive; every day is a new challenge. I’ve lost everything from my job, my home, my medical insurance, life as I knew it and everything that meant anything. Suffering from severe complications and side effects while fighting for my rights to Social Security Insurance and Disability Insurance… this is what my life has become. Finding help and answers has been very difficult. Advocacy for Patients with Chronic Illness, Inc. has help me and others like me suffering from these same experiences to make sense of our legal rights. They advocate and give us a voice when our voices are no longer being heard.

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.