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.
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.
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!
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.
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.
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.
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
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.
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
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.