Resources for Hemophilia

Hemophilia is a rare disease – with only about 20,000 Americans diagnosed and 400,000 people with the disease worldwide. It is a bleeding disorder, which “results when the blood’s ability to form a clot at the site of blood vessel injury is impaired.” There are two types of hemophilia – A and B. Hemophilia A is more common. According to Hemophilia.org – “Hemophilia A, also called factor VIII (FVIII) deficiency or classic hemophilia, is a genetic disorder caused by missing or defective factor VIII, a clotting protein.”  Hemophilia B on the other hand, is “caused by missing or defective factor IX” which is also a clotting protein. Hemophilia has many symptoms, that are all related in that the patient’s blood does not clot properly causing them to bleed for longer. Some of the common symptoms include: nose bleeds, prolonged bleeding from minor cuts, blood in the urine or stool, and bruising easily, among others. There are a handful of different treatment options, the most popular being replacement therapy. From the Hemophilia Federation of America, “Hemophilia is treated by injecting the missing factor protein into the affected person’s vein. The injection makes the factor immediately available in the bloodstream and the body is able to activate it to continue the clotting cascade and stop the bleeding.”

bloodstream

Finding Help

The first place to check for assistance would be the NeedyMeds Hemophilia Resource Page. On this page we list all of the programs available for Hemophilia drugs along with links to more resources and programs, along with informational links. The Patient Assistance Program listings have contact information, along with application forms, for each program. We recommend calling each program to discuss qualifications before applying.

 

42-pack81-021514-tmOn this page we also list links to a number of organizations dedicated to Hemophilia education, research, and advocacy. These organizations are:

 

In addition to the Hemophilia resource page, we also recommend checking our Hemophilia Diagnosis-Based Assistance listings. This page includes a list of programs, both national and state-specific, dedicated to hemophilia. There are currently 47 programs listed providing a variety of services including assistive technology, medical equipment, travel expenses, co-payments and more. We also recommend checking the Diagnosis-Based listings for Bleeding/Clotting Disorders, Blood Disorders, and Hemophilia Inhibitors.

 

We also have listings of over 50 camps for patients with Hemophilia. These camps are located all across the country, some are summer-camps while others run year round. There are also over 40 scholarships available specifically for students with hemophilia.

 

Know of any programs we missed? Leave us a message in the comments or send us a message at blog@needymeds.org!

 

Leukemia & Lymphoma Resources

In honor of Leukemia and Lymphoma Awareness Month we are focusing this week’s blog post on resources for these two conditions. Leukemia is a type of blood cancer that is fairly common, with an estimated 48,610 new cases each year. From the Leukemia and Lymphoma Society website, “Leukemia is a type of cancer that affects the blood and bone marrow, the spongy center of bones where our blood cells are formed. The disease develops when blood cells produced in the bone marrow grow out of control.” There are multiple types of Leukemia, some more common than others. The four most common types are named according to the type of cell that is affected, they are Acute Myeloid Leukemia (AML), Acute Lymphoblastic Leukemia (ALL), Chronic Myeloid Leukemia (CML) and Chronic Lymphocytic Leukemia (CLL).  Lymphoma is similar to Leukemia in that it is a common type of blood cancer. From the Leukemia and Lymphoma Society, “Lymphoma is the name for a group of blood cancers that develop in the lymphatic system. The two main types are Hodgkin lymphoma and non-Hodgkin lymphoma (NHL).
In 2013, about 731,277 people are living with lymphoma or are in remission (no sign of the disease). This number includes about 172,937 people with Hodgkin lymphoma and 558,340 people with NHL.” Hodgkin lymphoma is defined by the presence of Reed-Sternberg cells, named after the scientists who discovered them; these are larger cancerous cells. Non-Hodgkin lymphoma, on the other hand, “represents a diverse group of diseases distinguished by the characteristics of the cancer cells associated with each disease type.”

 

What Help is Available for Leukemia?

Doctor shaking hand with patientThe first place to check for assistance is the NeedyMeds Leukemia Information Page. On this page we list what patient assistance programs are available for common Leukemia medications. These programs offer the medication at little-to-no cost to qualifying patients. Simply click the name of the medication to get information on the program – you will have to contact the program directly to apply. On this page we also link to four helpful and informative organizations – the Leukemia & Lymphoma Society, DKMS Americas, the Leukemia Research Foundation, and Treatment Diaries. These resources provide a wealth of information on the disease, current treatments, and research. Additionally we recommend checking the Diagnosis-Based Assistance listings for Leukemia. Which has twelve national and state-specific programs that offer a variety of services to patients in need.

 

What Help is available for Lymphoma?

Again the best place to start would be the Lymphoma Resource page on the NeedyMeds site. This page is a collaborative effort with the Lymphoma Research Foundation, and like the Leukemia resource page it contains information on all available programs for Lymphoma drugs. On the right side of the page are a variety of links with information provided by the Lymphoma Research Foundation. In addition to the resource page we also have two national programs for Lymphoma on our Lymphoma Diagnosis-Based Assistance listings. These two programs offer financial assistance with child care, living expenses, co-pays, testing, and more.

For both Lymphoma and Leukemia we also recommend checking the Diagnosis-Based Assistance listings for Blood Disorders, Chronic, Serious or Life Threatening Illnesses, and Cancer. Between these three pages are over 150 national and state-specific programs offering a wide variety of assistance and services ranging from transportation and lodging to wigs, medical supplies, food, equipment, and more.  We also have a listing for one camp for children with Leukemia and two scholarships for students who have Leukemia or Lymphoma.

Know of a program we missed? Let us know in the comments or send us an e-mail at info@needymeds.org!

Resources for Parkinson’s Disease

Parkinson’s disease is a fairly common disorder, with nearly 60,000 people diagnosed in the United States every year. It is a progressive neurological disease that affects the body’s motor system. There are a variety of symptoms, from Parkinson’s Action Network, “The four primary symptoms of Parkinson’s disease are tremor, or trembling in hands, arms, legs, jaw, and face; rigidity, or stiffness of the limbs and trunk; bradykinesia, or slowness of movement; and postural instability, or impaired balance and coordination.”Currently the cause of Parkinson’s Disease is unknown and there is no cure, but according to Parkinson’s Action Network “scientists and researchers believe there to be both genetic and environmental factors.” While there is currently no cure, there are a variety of treatment options available.

 

Finding Help on NeedyMeds

The first place to look for assistance would be our Parkinson’s Disease Information Page which lists all of the programs available in one place. Here we list the drugs that are commonly prescribed for Parkinson’s Disease. Those that are in blue link to a Patient Assistance Program (PAP) listing for the drug. Patient Assistance Programs provide the medication at reduced or no cost to qualifying patients. To apply simply contact the program and request an application form. For more information on PAPs check our previous blog post here.

 

doctorvisit Along with Patient Assistance Program listings, the Parkinson’s Disease Information Page also has links to a number of organizations dedicated to Parkinson’s awareness, education, and research. These organizations include the National Parkinson Foundation, Parkinson’s Resource Organization, American Parkinson Disease Association, Parkinson’s Action Network, The Michael J. Fox Foundation for Parkinson’s Research, Parkinson’s Disease Foundation, and Treatment Diaries. We recommend exploring all of these pages to learn more about the disease and the people working hard to find a cure.

 

The next place to check would be our Diagnosis-Based Assistance Program listings page for Parkinson’s Disease. This page lists national and state-specific programs for Parkinson’s patients. These programs provide a variety of services ranging from medical supplies and equipment, to service animals, meals and co-pay assistance. Just click on the name of the program for more information, including eligibility guidelines, application process, and contact information. We also recommend checking the Diagnosis Based listings for Chronic, Serious or Life Threatening Illnesses for more similar programs that may be of assistance.

 

Know of any programs we missed? Leave us a message in the comments or send an e-mail to info@needymeds.org

Introducing GAP: The Generic Assistance Program

NeedyMeds has always been a leading resource for information on patient assistance programs to help cover the costs of brand name drugs. There are hundreds of programs providing free or low-cost brand name medication, but there is yet to be an assistance program to help with the cost of expensive generic drugs. It is a common misconception that generic medications are all inexpensive. The truth is that there are many that cost hundreds of dollars per year, and are essential to the health of many people. With the help of Rx Outreach, the largest non-profit pharmacy in the country, NeedyMeds is launching a first-of-its-kind generic medication assistance program, called GAP (Generic Assistance Program).

 

GAP_final_logo

The Generic Assistance Program will offer nearly 20 generic medications at no cost to people who meet program eligibility guidelines. The guidelines include:

  • Must have no prescription coverage for needed medication
  • At or below 100% Federal Poverty Level
  • Must be US citizen, legal entrant, or have a work visa

 

NeedyMeds and Rx Outreach provided the initial funding for the program and have launched a crowdfunding campaign on HEALfundr to expand GAP in the future. On top of that, contributions made through HEALfundr will be matched up to $50,000! We are hopeful that individuals, organizations, and generic manufacturers will see the value of this service and donate to help us expand and take advantage of the current matching program. The funds raised will be used to pay for a year’s worth of an offered generic medication for those in need.

Click here for program details or read the official press release here. Donate to the HEALfundr campaign! Sign up is completely free and donations are secure. Remember: every donation—whether it’s $5 or $50—will be matched dollar-for-dollar.

Resources for ALS

icebucketchallenge

Chances are you have at least seen a video on your social network of choice of someone you may know dumping ice water over their heads, or possibly even posted one. The “Ice Bucket Challenge” has become a mainstream phenomena and significantly raised awareness for those suffering from the chronic illness ALS. Donations have also been on the rise, with the ALS Association reporting over 7 times the amount donated in just the past three weeks compared to the same time period last year. With 260,000 new donors already, the number is expected to continue to climb.

 

What Is ALS?

ALS stands for Amyotrophic Lateral Sclerosis and is often referred to as “Lou Gehrig’s Disease” after the New York Yankee first baseman who retired due to the illness in 1939 and died two years later. Today, 20% survive more than five years after diagnosis, with 5% living 20 years; physicist Stephen Hawking has lived for over 50 years since his diagnosis. Early symptoms include muscle weakness and stiffness, and progresses into a wasting paralysis. Amyotrophic Lateral Sclerosis affects 350,000 worldwide and it is estimated that 30,000 Americans have the neurodegenerative disease at any given time, with 5600 newly diagnosed each year. ALS kills an average of two out of every 100,000 people annually.

Finding Help on NeedyMeds

While donating to research into this debilitating condition can help find an effective treatment or cure, NeedyMeds offers information on several programs that may be able to help those currently suffering and requiring assistance.  Our ALS Resource Page has information and links to Patient Assistance Programs (PAPs) for medications commonly prescribed to ALS patients, offering them to patients at low- or no cost. Our Diagnosis-Based Assistance (DBA) page for ALS has several national programs that offer everything from service animals to financial assistance for equipment or home modifications as well as information on the individual ALS Association chapters and other local resources. Additional assistance may also be found in our Chronic, Serious, or Life-Threatening Illness DBA page. NeedyMeds also has information on Scholarships for young ALS patients and those otherwise affected by the disease who are determined to continue their education.

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