Resources for Autism

           Autism is a common disorder, with 1 in 68 American children born somewhere on the autism spectrum.  From AutismSpeaks.org, “Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development.”  The signs of autism are usually apparent when a child is between 2 and 3 years old.  Symptoms are different for everyone, according to autism-society.org. “Some of the behaviors associated with autism include delayed learning of language; difficulty making eye contact or holding a conversation; difficulty with executive functioning, which relates to reasoning and planning; narrow, intense interests; poor motor skills and sensory sensitivities.”  The cause of autism is still being researched and debated, although doctors generally agree that “There is no known single cause for autism spectrum disorder, but it is generally accepted that it is caused by abnormalities in brain structure or function.”.  There are lots of programs available for children with autism and their families, ranging from summer camps to supplies and medications.

 

What Help is Available?

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We have a number of resources listed on the NeedyMeds website for autism.  Our Autism Information Page should be the first place to look for assistance.  On this page we list all of the patient assistance programs  (PAPs) available for drugs commonly prescribed for autism.  These programs offer medications at low-or-no-cost to low-income families.  Simply click on the drug name to get information on the program (we list contact information and also have the application form available to download) and submit an application to apply.  We have also highlighted a number of Autism organizations:

  • Autism Speaks – The World’s leading Autism Science and Advocacy organization
  • US Autism & Asperger Association – Dedicated to Autism and Asperger education, support, and solutions
  • Center for Autism and Related Disorders – One of the world’s largest organizations using Applied Behavior Analysis (ABA) in the treatment of Autism Spectrum Disorder.
  • Autism Society of America – The Nation’s leading grassroots Autism organization
  • Treatment Diaries – An innovative social network that privately connects patients so they can share their experiences

 

The next place to check would be our Diagnosis-Based-Assistance listings for autism.  This page lists national and state-specific programs for autism, covering a wide variety of services.  Some of the programs listed include:

  • Blessings Unleashed, Paws with a Cause, and Freedom Service Dogs of America – Provide Service Animals
  • AutismCares – Provides non-medical financial assistance
  • ACT Today! & Good Charity Inc. – Provide medical financial assistance

 

We also have listings of 130 camps for children with autism and their families.  These camps are located all over the United States. Some operate year round while others are summer camps.  To find out more about Camps and Retreats, read our previous blog post.  Additionally there are three scholarships listed for young adults with autism.

 

Resources for Breast Cancer

Breast Cancer is a very serious condition that affects many women in America. According to the National Breast Cancer Foundation, “One in eight women will be diagnosed with breast cancer in their lifetime.” It is also the most commonly diagnosed cancer in women, with over 220,000 women diagnosed annually in thde Unite States with an estimated 40,000 annual deaths. Breast Cancer also affects men, although it is more rare — “an estimated 2,150 men will be diagnosed with breast cancer and approximately 410 will die each year.”  Breast Cancer affects each patient differently — “Breast cancer can begin in different areas of the breast — the ducts, the lobules, or in some cases, the tissue in between.” There are also numerous types of Breast Cancer – non-invasive, invasive, recurrent, and metastatic. Luckily there are many programs available nationwide to help Breast Cancer patients pay for the costs of medicine, procedures, and more.

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What Help is Available?

The first place to check for financial assistance with Breast Cancer costs would be our Breast Cancer Disease Information Page. This page organizes all of the resources available for Breast Cancer in one place. On this page you will find a list of all drugs that treat Breast Cancer. Those that are blue link to a Patient Assistance Program that offers the drug at a reduced or no cost. On this page we have also highlighted a number of Breast Cancer organizations including BreastCancer.org, the Susan G. Komen for the Cure Foundation, The National Breast Cancer Foundation, American Cancer Society, National Cancer Institute, Living Beyond Breast Cancer, Breast Cancer Research Foundation, American Breast Cancer Foundation, and Treatment Diaries.

 

The next place to check would be our Diagnosis-Based Assistance listings for Breast Cancer. This page lists national and state-specific programs for Breast Cancer patients. Currently over 200 programs are listed.

Some of the National Programs include:

 

There are many more programs available in addition to the ones mentioned above, providing services that range from equipment, home care, wigs, medical supplies, respite care and much more. There are also dozens of state-specific programs, so if there is not a national program that can help there may be a local program that can. For example the National Breast Cancer and Cervical Cancer Early Detection Program. Additionally you may want to check the Diagnosis-Based Assistance listings for Cancer – All and Chronic, Serious or Life Threatening Illnesses. We also currently have two camps available for patients with cancer and their families, as well as four scholarships for breast cancer patients and their children.

 

Know of any programs we may have missed? Let us know in the comments or send an e-mail to info@needymeds.org!

 

 

All About Government Programs

One often overlooked resource on the NeedyMeds website is our listings of Government Programs. These programs are state-specific, and help needy families and individuals with the cost of healthcare. We regularly update this database, which includes State-Sponsored Programs, Medicare Information, Medicaid Sites, State Health Insurance Assistance Program information, and Federal Poverty Level and Tax Return Request Form guidelines and information. If you are not having luck finding a PAP or co-pay program for your medication or particular disease, there may be a Government Program there to help.

 

State Sponsored Programs

Programs that are created, sponsored, or funded by a state, county or local government are considered State Sponsored Programs. These programs provide a variety of types of assistance ranging from medical care, financial assistance, health insurance, prescription assistance, assistance with medical supplies and much more. We list these programs on our website by state. Simply choose your state from the drop-down menu to see what is available. We currently have 938 programs listed across all 50 states and some US territories.

 

Medicare Information

Under our Government Programs listings we also have a page dedicated to Medicare information. Medicare is a federal health insurance program for people over the age of 65, along with people with certain disabilities and those suffering from end-stage renal disease. Medicare is broken down into four parts: Part A is hospital insurance; Part B is optional and covers outpatient hospital care and doctor’s services; Part C is a combination of Parts A and B also referred to as Medicare Advantage; and Part D Prescription Drug Coverage. In addition, we list a number of helpful websites that do a great job of explaining how Medicare works.

 

Medicaid Sites

Previously on the NeedyMeds Voice we told you All About Medicaid. Medicaid is a joint federal and state entitlement program that helps provide medical care to people with low-income. The program operates at the state level, so each state’s program is different. Under our Government Programs listings we include a page on Medicaid Sites. On this page simply choose your state and you will be taken directly to your state’s official Medicaid page.

 

State Health Insurance Assistance Program Sitescapitol

Commonly referred to as SHIP, the State Health Insurance Assistance Program is a federally funded program that provides free counseling and assistance on all aspects of Medicare (parts A,B,C,D) to people enrolled in or eligible for Medicare. Like Medicaid, we have previously discussed these services on the NeedyMeds Voice. These programs provide free telephone and in-person counseling sessions to educate Medicare recipients and their families about all things Medicare – including the benefits, and cases of fraud and abuse. Each state has its own name for the State Health Insurance Assistance Program. To find a program, simply head to the State Health Insurance Assistance Program page and select your state.

 

Federal Poverty Guidelines and Tax Return Request Forms

We list information on the Federal Poverty Guidelines (or FPL) and also Tax Return Request Forms. These resources are there to help people who are applying for a Patient Assistance Program, as many programs have an income requirement and ask for a copy of your tax return.

The Federal Poverty Guidelines page shows the breakdown of family size and income at 100% of the FPL, and also includes an easy to use FPL Income Calculator.

Since many programs have an income limit that is a certain percentage of the FPL, we also include a schedule showing various percentages of the FPL (100%, 133%, 150% etc.).
On the Tax Return Request Form page we have two downloadable PDFs available – Request for Copy of Tax Return and Request For Transcript of Tax Return. To get a copy of your tax return simply fill out the form and follow the mailing instructions.

All About Resources for Epilepsy

Over 2 million Americans suffer from epilepsy, with about 1 in 26 developing epilepsy in their lifetime. Epilepsy is a neurological condition that affects the nervous system causing seizures, and is the fourth most common neurological disorder affecting people of all ages. It is also commonly referred to as a seizure disorder. Epilepsy is different for everyone, as there are many different types of seizures. “A person is diagnosed with epilepsy if they have had at least two seizures that were not caused by some known and reversible medical condition… The seizures in epilepsy may be related to a brain injury or a family tendency, but often the cause is completely unknown.”

 

There are a number of treatments available for epilepsy. The primary way epilepsy is controlled is through medication, with about 7 out of 10 patients taking medications for treatment. Medication doesn’t actually solve the problems that cause seizures, instead focusing on stopping or preventing seizures from happening. For some patients medications simply don’t work, and many undergo surgery to control their seizures if medication does not help. Others try to control their seizures by changing their diet, or using devices that can help prevent or control seizures via nerve stimulation.

 

Finding Help

brainWe have many resources for epilepsy listed on the NeedyMeds site. The first place to check would be our Diagnosis-Based Assistance listing for Epilepsy. This page currently has 47 programs listed, including both national and state-specific programs.

Some of the national programs listed include:

 

We also have an Epilepsy Disease Resource Page (http://www.needymeds.org/inclusions/epilepsy.htm). On this page we list what Patient Assistance Programs are available for epilepsy medications. We have also highlighted a handful of organizations that help people with epilepsy – the Epilepsy Foundation, NYU Comprehensive Epilepsy Center, CURE Citizens United for Research in Epilepsy, and Treatment Diaries. We also have 41 summer camps listed, and 11 scholarship programs. Know of any programs we missed?  Leave us a message in the comments, or send an e-mail to info@needymeds.org.

 

 

How To Enroll in a Clinical Trial – Tips from ZipTrials.us

Most of us have heard of clinical trials, but many are unclear as to what they are and how to find them. When it comes to creating life-changing drugs and innovative new therapies, medical research is critical. And being so actively engaged in your own health care can grant you access to the most ground-breaking treatment options available. It also allows you to interact with leading medical experts from some of the most preeminent medical facilities in the country.

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Additionally, participating in a clinical trial helps the medical community better understand worldwide health concerns. In turn, new and effective treatment options can be explored and developed. Volunteering in this way can be rewarding on many levels.

What exactly is a clinical trial?

Clinical research studies are designed to improve human health and well-being by exploring new medical treatments, preventions, diagnostics and medications. Evaluating the safety and efficacy of new approaches is what drives clinical trials, and also what propels advancements in global health.

Clinical trials fall into one of four categories:

Phase I studies assess the safety of the drug or treatment being tested. The aim of a phase I study is to investigate the effects the drug or treatment has on humans.

Phase II studies focus on the efficacy of the drug or treatment. Most often, one group of participants receives the drug being tested, while another group receives a placebo.

Phase III studies are much larger and can have up to several thousand participants. A phase III study can last several years and aims to gather a more comprehensive idea of the drug or treatment’s effectiveness, as well as possible side effects. If a drug company completes this phase of testing, it can request FDA approval to market the drug.

Phase IV studies are conducted after the drug or treatment has been approved for consumer sale. They aim to compare the drug or treatment being tested to similar ones on the market. They may also serve to monitor a drug or treatment’s long-term effects more closely or measure its cost-effectiveness.

 

How can I find clinical trials that are open for enrollment in my city?

You can search for open clinical trials by selecting your state from the drop down menu on the ZipTrials homepage. From there, you’ll find a list of available studies in your area that are currently seeking participants.

How do I enroll in a medical research study?

Once you have pinpointed a study you’d like to participate in, you’ll see a “Click to Register” button beneath the study’s description. Clicking on this link will direct you to the registration page for that study.

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Will I be compensated for my participation in a clinical trial?

In some cases, a research study may compensate participants for their time or travel expenses. Some studies also offer compensation in the form of complimentary medications and/or medical treatment.

 

Will my personal/medical information be confidential?

Absolutely. Patient privacy is always a top priority for the ZipTrials team, and we do not share any of your contact information with third parties. Please see the ZipTrials Privacy Policy here. You may also share additional information with a participating facility when you register for a clinical study. Any information you choose to share with a specific facility will be subject to their privacy policies.

 

 

What kinds of clinical trials are currently seeking participants?

ZipTrials is continually posting new and exciting studies covering a wide array of topics. A list of our most up-to-date study topics can be found on the ZipTrials homepage.

How can I contact a research facility?

Once you find a study of interest, hit the “Click to Register” button. Then enter some quick contact info so the research study knows how to get in touch with you. From there, your inquiry will be sent directly to a research coordinator who will process your request in a timely manner. If you seem like a right fit for that study, someone from the research facility will contact you directly.

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